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Annual Report 2019

Annual Reports


Preface

As the Chairperson of Alzheimer Europe, it gives me great pleasure to introduce our 2019 Annual Report which looks back on our activities and achievements last year. As in the past, our core activities were funded by an operating grant awarded by the European Commission in the framework of the European Union’s health programme. I would like to express our gratitude for this ongoing support, which allowed the organisation and its 39 national member organisations to give a voice to people with dementia, make dementia a public health priority, support dementia research and strengthen our European movement, all whilst basing our activities on a rights based approach.

Alzheimer Europe involved people living with dementia in all aspects of its work. The organisation’s European Working Group of People with Dementia (EWGPWD) held four meetings, at which the 13 group members provided input on several EU-funded research projects. The group also explored the concept of “dementia-friendly communities”,
developed its own recommendations on the subject and reviewed those of the 2nd European Joint Action on Dementia. All members also actively participated in the 29th Alzheimer Europe Conference (#29AEC) in The Hague and organised a special symposium called “Inspired by connections”. Additionally, EWGPWD representatives
were invited to take part in a scientific advice procedure of the European Medicines Agency (EMA).
Finally, the group’s Chairperson participated in all four of Alzheimer Europe’s Board meetings during 2019, as an ex-officio Board member with full voting rights. Our organisation benefits immensely from the invaluable input and example of this dedicated group of people living with dementia.

Across Europe and beyond, policymakers, organisations and research bodies continue to work tirelessly to ensure a coordinated response to dementia, at a national, European and international level. As part of our effort, we convened two meetings of the European Group of Governmental Experts on Dementia during 2019. These meetings were attended by representatives from 22 national health ministries as well as the World Health Organization (WHO) and the 2nd Joint Action on Dementia. Alzheimer Europe also actively contributed to the work of the Joint Action and supported the launch of the results at its Annual Conference in The Hague.

In the run-up to the European Parliament elections in May 2019, we gathered support from 230 candidates for our European Dementia Pledge campaign, which led to the European Alzheimer’s Alliance (EAA) beginning its new parliamentary term with 98 Members of the European Parliament (MEPs). It remains one of the Parliament’s largest interest groups. Three Alzheimer Europe lunch debates were organised in February, June and December, hosted by members of the EAA at the European Parliament in Brussels, on topics including dementia research and prevention. In 2019, Alzheimer Europe also welcomed the launch of Spain’s Alzheimer’s Plan, Switzerland’s National Platform on Dementia and the groundwork done towards the upcoming national strategies in Germany, Iceland and Sweden.

Finally, we were delighted with the media response to our 2019 Yearbook on the prevalence of dementia in Europe which estimated that the number of people living with dementia in Europe will increase from 9,780,678 in 2018 to 18,846,286 in 2050. The attention the publication received helped us to highlight the importance of health systems being ready to meet the fast-increasing demand, as well as the need for greater investment in research into the treatment and prevention of dementia.

The 2019 priority for our European Dementia Ethics Network was to examine ethical challenges affecting the involvement of people with dementia in research. Our findings were published in the 2019 Ethics report at the end of the year, and we were pleased to launch the publication at our first European Parliament lunch debate of 2020, together with our 2019 Yearbook on dementia prevalence. Thanks to the support of the Robert Bosch Stiftung, we published our report on intercultural care and support for people with dementia from minority ethnic groups in French and German and launched an online database of intercultural dementia care initiatives.

In terms of Alzheimer Europe’s work to support dementia research, we expanded our Clinical Trials Watch (CTW) in 2019, adding further information about actively-recruiting II and III clinical trials in Europe. We also published a special supplement to one of our Dementia in Europe magazines dedicated to “Clinical trials on Alzheimer’s disease in Europe”.

Our Annual Conference was, as always, an opportunity to share and gather knowledge on all aspects of dementia and to support international collaboration and strengthen ties within the research community. Held from 23–35 October under the theme “Making valuable connections”, the event attracted 981 delegates from 46 countries worldwide.

Alzheimer Europe also continued its involvement in many EU research projects – actively participating in AD-Detect & Prevent, AMYPAD, EPAD, MOPEAD, PACE, PARADIGM and PRODEMOS and collaborating with DISTINCT, INDUCT, MinD, SPAN+ and SyDAD with MIRIADE, Neuronet and RADAR-AD being added to the impressive project portfolio of Alzheimer Europe in 2019. These projects provide an additional funding stream and allow Alzheimer Europe to stay at the forefront of European research.

As an organisation, we play an active role in disseminating the results and outcomes of these projects and the work of our collaborators. To ensure news about dementia in Europe is as widespread as possible, we published three editions of our magazine and eleven monthly e-newsletters, the latter containing a total of 589 news stories, all
of which were also shared via our website and our social media accounts (Facebook, Twitter and LinkedIn). The magazine has a distribution list of 3,500 (including all MEPs) and the e-mail newsletter reached 8,737 subscribers across Europe and beyond.

The European Dementia Movement grows stronger with every passing year and 2019 was no exception. We signed a memorandum of understanding with the European Ageing Network and continued to work closely with the European Patients’ Forum and European Disability Forum, campaigning with them and other European organisations for the adoption of the European Accessibility Act and for a greater role of the European Union in the health field via the #EU4Health campaign. We also further improved our relationship with INTERDEM, the European Alzheimer’s Disease Consortium and the European Academy of Neurology. The end of the year saw our 5th Alzheimer’s Association Academy, held in Brussels, at which we organised a number of capacity-building workshops. In attendance were representatives from Alzheimer Europe and its members, company representatives and expert speakers from various institutions and organisations across Europe and from different European projects.

All of this was made possible thanks to the hard work of Alzheimer Europe’s small, dedicated team, led by Director Jean Georges. In 2019, the team included Christophe Bintener, Cindy Birck, Kate Boor Ellis, Ana Diaz, Dianne Gove, Gwladys Guillory, Owen Miller, Stefanie Peulen and Grazia Tomasini, as well as two new staff members, Aideen
O’Brien and Angela Bradshaw who joined in April and May respectively. Thanks also go to our members, to the EWGPWD and to all the external experts who collaborated in our activities and projects. We are also very grateful for the generosity of the sponsors that supported our 2019 activities: Amgen, Biogen, Eisai, Essity, European Commission, Fondation Alzheimer Luxembourg, Gates Ventures, GE Healthcare, Janssen, Lilly, Lundbeck, Municipality of The Hague, Newsweaver, Nutricia, Otsuka, Robert Bosch Stiftung, Roche and the
Scottish Government.

Last but not least, I would like to acknowledge my fellow Alzheimer Europe Board members for their collaboration, advice and recommendations on the organisation’s activities and priorities. Between them, they have gained many years of invaluable experience working for Alzheimer associations across Europe, all of which is a huge asset
to us and to our work.

Iva Holmerová
Chairperson of Alzheimer Europe


Executive Summary

In 2019, Alzheimer Europe:
•    Provided a voice to people with dementia and

  • organised four meetings of the European Working Group of People with Dementia (EWGPWD) which involved 13 members nominated by 13 member organisations
  • involved the Chairperson of the European Working Group of People with Dementia as a full voting member at AE Board meetings
  • ensured people with dementia and carers were represented in all AE projects and working groups and involved the group in various EU projects where AE is asked to provide the views of people with dementia
  • involved the EWGPWD in the organisation of the Annual Conference and organised a lunch time symposium entitled “Inspired by connections”
  • explored the concept of dementia-friendly communities, reviewed the recommendations developed by the 2nd European Joint Action on Dementia and developed recommendations reflecting the priorities and perspectives of people with dementia
  • had representatives of the group take part in a scientific advice procedure of the European Medicines Agency

•    Made dementia a European priority and

  • carried out a collaborative analysis of epidemiological studies in European countries published since the end of its EuroCoDe (European Collaboration on Dementia) project
  • published its 2019 Dementia in Europe Yearbook with updated prevalence rates for dementia in Europe and estimated the number of people with dementia in the EU28 in 2018 to 8,885,101 increasing to 10,283,905 in 2025 and 16,276,070 in 2050
  • used the 2019 European Parliament elections to launch its European Dementia Pledge calling for dementia to be made a European priority and received the signatures of 230 candidates from 23 EU countries
  • counted 161 members of the European Alzheimer’s Alliance at the end of the European Parliament mandate and reconvened the Alliance after the European Parliament elections with 98 members from 27 Member States at the end of 2019
  • facilitated two meetings of the European group of governmental experts on dementia in June and December with representation from 22 national health ministries and the World Health Organization
  • actively contributed to the work on diagnosis and post-diagnostic support, care coordination, residential care and dementia-friendly communities of the 2nd European Joint Action on Dementia and supported the launch of the Joint Action’s results at its Annual Conference
  • welcomed the launch of the Spanish Alzheimer’s Plan and the Swiss National Platform on Dementia and the preparations towards the development of a dementia strategy in Germany and Sweden
  • attended a meeting of the WHO European and Eastern Mediterranean Regions in Malta
  • organised two face-to-face meetings with governmental affairs representatives from its national organisations for an exchange on EU and national policy developments and campaigns
  • played an active role on the Patients’ and Consumers’ Working Party of the European Medicines Agency

•    Promoted a rights-based approach to dementia and

  • identified the involvement of people with dementia in research as the priority of the work of its European Dementia Ethics Network
  • set up a working group comprised of experts in the field and published a report “Overcoming ethical challenges affecting the involvement of people with dementia in research: recognising diversity and promoting inclusive research” with the results of the literature review and recommendations
  • translated and published its report on intercultural care and support for people with dementia from minority ethnic groups in German and French and launched an online database of intercultural dementia care initiatives thanks to the support of the Robert Bosch Stiftung

•    Supported dementia research and

  • organised the 29th AE Conference in The Hague, Netherlands from 23 to 25 October under the motto “Making valuable connections” in collaboration with Alzheimer Nederland with 981 participants from 46 countries
  • identified 71 guidelines from 25 European countries on the diagnosis, treatment and management of dementia and developed a report comparing
  • continued with the development of its European Dementia Observatory by proactively identifying relevant policy and research developments and publishing 589 news stories via its monthly e-mail newsletter, its website and social media
  • attracted 614,633 unique visitors to its website and ensured social media were a full part of the organisation’s communication activities and ended the year with 10,600 Twitter followers and 8,191 Facebook likes
  • published 11 e-mail newsletters which were sent to 8,737 subscribers.

•    Strengthened the European dementia movement and

  • carried out a mapping exercise of its national member organisations to understand their membership. Staffing, funding, activities ad services
  • organised a number of capacity building workshops for its member organisations as part of its Alzheimer’s Association Academy
  • held quarterly meetings of the AE Board to monitor the association’s financial situation and the implementation of its work plan
  • organised its Annual Meeting in the framework of the Annual Conference in The Hague where members adopted the organisation’s report on past activities, future work plan and budget, elected a new Board and welcomed Estonia and North Macedonia as new members
  • continued as an active member of the European Patients’ Forum and European Disability Forum and campaigned with other organisations for the adoption of the European Accessibility Act and for a greater role of the European Union in the health field via the #EU4Health campaign
  • further improved the relationship with INTERDEM, collaborated with the European Alzheimer’s Disease Consortium and the European Academy of Neurology and signed a memorandum of understanding with the European Ageing Network

•    Participated and carried out a number of projects and

  • continued its involvement in a number of EU funded projects by representing the views of people with dementia and their carers in the research consortium, by contributing to the ethical discussions and by supporting the communication and dissemination activities towards a non-scientific audience:
    • AD-Detect-Prevent (Presymptomatic AD detection and prevention)
    • AMYPAD (Amyloid imaging to prevent Alzheimer’s disease)
    • EPAD (European Prevention of Alzheimer’s Dementia)
    • MOPEAD (Models of Patient engagement for Alzheimer’s disease)
    • PACE (Effectiveness of palliative care for elderly people in long term care facilities in Europe)
    • PARADIGM (Patients active in research and development for an improved generation of medicines)
    • PRODEMOS (Prevention of Dementia using Mobile phone Applications)
  • started its collaboration with the following EU projects
    • Neuronet (Efficiently networking European neurodegeneration research)
    • RADAR-AD (Remote assessment of disease and relapse – Alzheimer’s disease)
  • supported the following EU projects
    • DISTINCT (Dementia: Intersectorial strategy for training and innovation network for current technology)
    • INDUCT (Interdisciplinary Network for Dementia Utilising Current Technology)
    • MinD (Designing for People with Dementia)
    • MIRIADE (Multi-omics interdisciplinary research integration to address dementia diagnosis)
    • SPAN+ (Empowering people with dementia)
    • SYDAD (Synaptic Dysfunction in Alzheimer Disease)
  • developed a number of projects funded thanks to the support of its corporate sponsors and other partners
    • organised European Parliament lunch debates on “Dementia as a research priority” in June and on “Improving the diagnosis of dementia – Findings from European research collaborations” in December
    • convened three company round table meetings bringing together representatives of industry and national Alzheimer’s associations
    • published three editions of the Dementia in Europe magazine
    • started a mapping exercise of data sharing practices in European research projects thanks to the support of Gates Ventures
    • expanded its Clinical Trials Watch and made available on its website dementia-friendly information on 16 phase II and 12 phase III clinical trials conducted in Europe
    • produced a special supplement to its Dementia in Europe Magazine dedicated to “Clinical trials on Alzheimer’s disease in Europe”

The Strategic Plan of Alzheimer Europe sets out the five main objectives of the organisation and highlights key aims and actions to be undertaken under each objective for the period covered by the plan (2016-2020).

This year’s Annual Report breaks down the organisation’s core activities into these five key strategic objectives. In addition, the report highlights the activities undertaken by Alzheimer Europe in support of EU projects it partnered with and presents those activities it carried out thanks to the support of its corporate sponsors and other partners.


In 2019, Alzheimer Europe received an operating grant in the framework of the European Union’s Health Programme which provided the funding for the organisation’s core activities.

Objective 1: Providing a voice to people with dementia and their carers

Thanks to its European Working Group of People with Dementia (EWGPWD) from 12 different countries, AE was in a position to showcase the important contributions people with dementia can make.

In 2019, the group was comprised of the following members:

  • Chair: Helen Rochford-Brennan (Ireland)
  • Vice-Chair: Chris Roberts (Wales, United Kingdom)
  • Members:
    • Idalina Aguiar (Portugal)
    • Stefan Eriksson (Sweden)
    • Tomaž Grižinič (Slovenia)
    • Amela Hajrič (Bosnia & Herzegovina)
    • Carol Hargreaves (Scotland, United Kingdom)
    • Bernd Heise (Germany)
    • Miha Kastelic (Czech Republic)
    • Petri Lampinen (Finland)
    • Thomas Maurer (Switzerland)
    • Angela Pototschnigg (Austria)
    • Geert Van Laer (Belgium)

The EWGPWD had 4 face-to-face meetings in 2019:

  • 18-20 February, Munsbach (Luxembourg)
  • 25-27 June, Brussels (Belgium)
  • 28-29 September, Brussels (Belgium)
  • 10-12 December, Brussels (Belgium)

The Chair of the EWGPWD, Helen Rochford-Brennan actively participated in the meetings of the Board of Alzheimer Europe in 2019 and was replaced on one occasion by Chris Roberts, the Vice Chair.

The EWGPWD provided input on all of Alzheimer Europe’s activities, as well as EU projects and initiatives where the views of people with dementia were.

A key priority of the 2019 Work Plan was for the EWGPWD to explore the concept of dementia-friendly communities, review the recommendations developed by the 2nd European Joint Action on dementia and develop recommendations reflecting its own priorities and perspectives. 

In 2019, the EWGPWD and/or its members contributed towards:

  • Alzheimer Europe activities (29th Alzheimer Europe Conference, Alzheimer’s Association Academy, discussion paper on “Overcoming ethical challenges affecting the involvement of people with dementia in research: recognising diversity and promoting inclusive research”, Alzheimer E newsletter, clinical trials watch etc.)
  • EU projects in which Alzheimer Europe was involved (AD-Detect & Prevent, DISTINCT, INDUCT, MinD, PACE, PARADIGM, RADAR-AD and SPAN+)
  • One scientific procedure at the European Medicines Agency

Objective 2: Making dementia a European priority

As in previous years, Alzheimer Europe actively participated in the 2nd European Joint Action on Dementia coordinated by the Scottish Government and contributed to the priority areas of diagnosis and post-diagnostic support, crisis and care coordination, residential care and dementia friendly communities. The Executive Director of Alzheimer Europe was also a member of the action’s Programme Board and its committees for dissemination and evaluation. The Joint Action launched the final results of the programme during an evening symposium of Alzheimer Europe’s Annual Conference in The Hague, Netherlands.

In collaboration with the health ministries of Italy, the Netherlands and the Scottish Government, Alzheimer Europe convened two meetings of the Group of governmental experts on dementia. These meetings were attended by national health ministry officials from 22 European countries (Austria, Belgium, Bulgaria, Cyprus, Czech Republic, Estonia, Finland, France, Germany, Greece, Iceland, Ireland, Italy, Malta, Netherlands, Norway, Poland, Portugal, Slovakia, Slovenia, Sweden and United Kingdom) and the World Health Organization. Representatives of the 2nd Joint Action on Dementia updated the group on the progress and results of the action and the governmental experts had an exchange on national dementia strategies and activities in the field of palliative care and dementia registers.

2019 also saw a number of key developments at national, European and global level, which Alzheimer Europe was able to contribute to. On a national level, Alzheimer Europe welcomed the launch of the Alzheimer’ Plan in Spain and the Swiss National Platform on Dementia with announcements from Germany and Sweden that work would continue on the development of national dementia strategies in those countries.

Prior to the European Parliament elections, the membership of the European Alzheimer’s Alliance had grown to 161 member from all 28 Member States of the European Union. Alzheimer Europe used the elections to call for greater recognition of dementia as a European priority and encouraged candidates to sign the European Dementia Pledge. This pledge was supported by 230 candidates from 23 countries and allowed Alzheimer Europe to quickly reconvene the European Alzheimer’s Alliance after the elections. Sirpa Pietikäinen, MEP (Finland) agreed to act as the Chairperson of the Alliance and was joined by another 97 Members of the European Parliament as Alliance members by the end of 2019.

Alzheimer Europe also worked closely with its member associations and organised two meetings with public affairs representatives to discuss EU policy developments and to have an active exchange on national lobbying and campaigning activities.

Alzheimer Europe continued its collaboration with the European Medicines Agency (EMA) in 2019 as an accredited patient organisation and as a full member of EMA’s Patients’ and Consumers’ Working Party (PCWP). A member of the European Working Group of People with Dementia also contributed to an EMA scientific advice procedure.

For its 2019 Yearbook, Alzheimer Europe identified the prevalence of dementia as its topic. Using the methodological approach set out by the EuroCoDe (European Collaboration on Dementia) project, a literature search was conducted to gather the most recent high quality papers, from which reasonable prevalence estimates could be calculated in a collaborative manner. These were then applied to the most recently available population figures (2018 data from the United Nations World Population Prospects), on a country by country basis.

The prevalence rates between the 2019 project and the EuroCoDe study were not remarkably different, though the former were lower across the vast majority of age ranges for both men and women. However, when both were applied to population data for 2018, there was a significant difference in the overall number of people living with the condition. Specifically, the EuroCoDe prevalence estimate provides a figure of 11,001,771 people with dementia for the whole of Europe (EU27 + 10 non-EU countries) in 2018, which compares with a figure of 9,780,678 when using the new prevalence estimates, a difference of over 1 million people.

Alzheimer Europe also wanted to demonstrate the general trends for the number of people with dementia into 2025 and 2050. The new prevalence estimates were applied to projected population data for each country, establishing an estimate of the numbers of people who will have dementia in these years (in a scenario where prevalence rates among the age groups remained static). In doing so, the report identified that among the countries included, the total number of people living with dementia in Europe will increase to 11,379,701 by 2025 and to 18,846,286 by 2050. In other words, the number of people living with dementia was expected to almost double by 2050.

The 2019 Yearbook strongly reinforced the argument for dementia to be treated as a policy priority both at the national and European level, addressed through a strategic policy approach.

Objective 3: Promoting a rights-based approach to dementia

As in previous operating grants, AE continued to focus on ethical issues in 2019 and this led to the publication of a report entitled “Overcoming ethical challenges affecting the involvement of people with dementia in research: recognising diversity and promoting inclusive research”.

The work involved identifying and addressing ethical issues related to the involvement of people with dementia as research participants as well as in the context of Public and Patient Involvement (PPI). The paper was about the involvement of people with any kind of dementia in research, not just Alzheimer’s dementia and aimed to be of relevance for researchers, funders and research ethics committees involved in any kind or branch of research and in any discipline (e.g. quantitative, qualitative, mixed methods, clinical etc.).

The discussion paper was drafted by a group of researchers with expertise in inclusive dementia research and ethics, chaired by Alzheimer Europe. Some of the members of the working group also had experience as members of research ethics committees. The European Working Group of People with Dementia supported the ethics working group by providing input on various sections of the discussion paper and reviewing the recommendations. There were group discussions before and during the drafting of the text which influenced the issues addressed and the recommendations made.

The ethics group was chaired by Dianne Gove from Alzheimer Europe and the members of the group were Saloua Berdai Chaouni (Belgium), Ann Claeys (Belgium), Jean Georges (Luxembourg), Ingrid Hellström (Sweden), Karin Jongsma (Netherlands), Corinna Porteri (Italy), Mohammed Akhlak Rauf (United Kingdom), Krista Tromp (Netherlands), Jennifer R. van den Broeke (Netherlands) and Karen Watchman (United Kingdom).

In addition, thanks to the support of the Robert Bosch Stiftung, Alzheimer Europe was able to translate its 2018 report “The development of intercultural care and support for people with dementia from minority ethnic groups” and publish it in German and French. Alzheimer Europe also made available an online database of intercultural dementia care initiatives on its website.

Objective 4: Supporting dementia research

An important priority of Alzheimer Europe’s actions in the field of supporting dementia research was the identification and comparison of European and national guidelines on the diagnosis, treatment and management of Alzheimer’s disease and/or dementia. As part of this priority, Alzheimer Europe collaborated with its national member organisations and reached out to learned societies and was able to identify 71 guidelines. 4 of these were European in scope and the other 69 covered diagnosis, management and treatment guidelines from 25 European countries.

For the dissemination of research findings via its newsletter, website and conference, AE ensured that it did not only focus on basic and clinical science, but also involved researchers and academics with a psychosocial, care, mental health, socio-economic or health systems background. Particular attention was also paid to covering research news and identifying interesting developments from all member countries of the organisation.

In 2019, Alzheimer Europe published 11 editions of its monthly newsletter - except for July and August, which were combined. These e-newsletters contained information on Alzheimer Europe’s activities and those of its member organisations, as well as updates on projects in which the organisation is involved. Alzheimer Europe also reported on interesting policy initiatives both at national and European level, including news about its campaign to re-form the European Alzheimer’s Alliance in the run-up to the European Parliament elections in May 2019.

Alzheimer Europe also reported on its members’ activities related to action on dementia and on scientific developments, human interest stories, new resources and publications and job opportunities, as well as publishing accounts written by people living with dementia, with many members of the EWGPWD contributing to this section, as well as members of national dementia working groups in Europe.

A total of 589 articles were featured in Alzheimer Europe’s 2019 monthly e-newsletter (661 in 2018). They can be broken down into categories, as follows:

Subject

Number of articles (2019)

Number of articles (2018)

Activities and projects of Alzheimer Europe

127

169

European policy developments in the field of dementia and European Alzheimer’s Alliance

73

68

National policy developments

47

41

Activities and projects of AE member organisations

135

120

Scientific developments

132

160

Dementia in Society and “Living with dementia” section

40

46

New resources and publications, education and job opportunities

35

57

The AE newsletter had 8,737subscribers at the end of 2019 (7,967 in 2018).

In 2019, AE’s website also saw a significant increase of 14.39% in visitors compared to 2018.

Month

Visitors (2019)

Visitors (2018)

January

54,058

40,272

February

57,031

41,552

March

60,311

51,084

April

50,521

50,572

May

44,778

46,569

June

40,898

19,702

July

37,000

25,598

August

42,622

37,056

September

60,146

44,728

October

67,423

64,236

November

67,416

67,789

December

52,597

48,139

Total:

614,633

537,292

The 29th Alzheimer Europe Conference (#29AEC) took place in The Hague, Netherlands from 23-25 October 2019, it was organised together with Alzheimer Nederland. The event was organised under the theme of “Making valuable connections” and was attended by 981 participants from 46 countries (in 2018 the Barcelona conference was attended by 816 participants from 46 countries), including 38 people with dementia. Alzheimer Europe also involved its European Working Group of People with Dementia and the INTERDEM network of psychosocial researchers in the organisation and planning of the conference.

The programme featured 287 speakers and 241 poster presentations. The opening ceremony had participation from representatives of the Dutch Ministry of Health, Welfare and Sport and the City of The Hague. The four plenary sessions were dedicated to Diagnosis and post-diagnostic support, Technology and e-health, Making our societies more dementia-inclusive and How can research lead to better prevention.

In addition to the 4 plenaries and 2 keynote presentations, delegates at #29AEC had a choice of 36 different parallel sessions in English including parallel sessions organised by Alzheimer Nederland, INTERDEM and Neuronet. 11 special symposia were organised by the European Working Group of People with Dementia, Alzheimer Nederland and the sponsors of the AE Conference. The conference ended with an invitation to attend the 30th Alzheimer Europe Conference (#30AEC) in Bucharest, Romania in 2020.

Objective 5: Strengthening the European dementia movement

In 2019, Alzheimer Europe organised three capacity building events on 27 February, 26 June and on 10 and 11 December in Brussels.

The following issues were included as topics for these capacity building workshops:

  • National campaigning activities
  • Influencing legislative initiatives in the field of health and disability
  • Future of the European health and research programmes
  • European Parliament elections
  • European legislation on data protection
  • Data sharing in European research projects
  • The prevalence of dementia in Europe
  • Models of patient engagement in dementia
  • Ethical issues in dementia research
  • Involvement of patients and patients’ organisations in medicines development and research
  • The role of new technologies in the diagnosis and prognosis of Alzheimer’s disease
  • Empowerment of people with dementia

The Alzheimer Europe Board met four times (February, June, October and December) during the year and monitored the activities and finances of the organisation in relation to the agreed upon Work Plan and Budget.

The Annual General Meeting of Alzheimer Europe took place on 23 October in the framework of the Alzheimer Europe Conference in The Hague. At the meeting, the delegates adopted the 2018 Annual and Financial reports and approved the 2020 Work Plan and Budget.

As in previous years, Alzheimer Europe was an active member of the European Patients’ Forum (EPF) and European Disability Forum and contributed, alongside other European organisations, to the development of cross-disease positions on EU consultations and legislative proposals, as well as lobbying for greater recognition of health via the #EU4Health campaign coordinated by EPF and contributing to the EDF campaign on the European Accessibility Act.

Alzheimer Europe also continued its cooperation with INTERDEM, a pan-European research network for psychosocial interventions in dementia. The network celebrated its 20th anniversary prior to the Alzheimer Europe Conference in The Hague and organised a number of parallel sessions during the event. Ana Diaz represented Alzheimer Europe at the INTERDEM meeting in The Hague.

The Executive Director of Alzheimer Europe represented the organisation at the meetings of the European Alzheimer’s Disease Consortium, a network of memory clinics and centres involved in clinical research.

In 2019, Alzheimer Europe also continued its collaboration with the European Academy of Neurology (EAN) and the organisation’s Executive Director contributed to the EAN Dementia Panel and the Task Force for the development of a guideline on medical management issues in dementia.

Finally, Alzheimer Europe signed a memorandum of understanding with the European Ageing Network, a European association of long term care providers.


Involvement in EU projects

Alzheimer Europe was a full partner in a number of projects funded by the European research programmes Horizon2020, FP7 and the Innovative Medicines Initiative. In these projects, the organisation typically ensured that the views of people with dementia, carers and Alzheimer’s associations were included, contributed to the discussion of the ethical issues raised by the projects and supported or lead the dissemination activities. In 2019, Alzheimer Europe was a full partner in the following projects.

AD-Detect-Prevent

The two-year AD-Detect-Prevent project, which officially started on 1 November, aims to develop an easily accessible, user-friendly and motivating digital medical device called AD Detect & Prevent. If successful, this will offer personalised prevention programmes in the form of computerised cognitive training and behavioural/lifestyle interventions in one seamless product. Whilst predominantly targeted at people at risk of developing Alzheimer’s dementia, it may eventually be valuable for people with mild cognitive impairment or mild dementia.

Alzheimer Europe was mainly contributing to patient and public involvement and supports the dissemination and communication activities of the project. It was represented by Dianne Gove and Ana Diaz in this project. In 2019, they:

  • attended the Steering Committee meeting in Copenhagen in March and September
  • collaborated with the University of Nottingham on patient and public involvement activities
  • organised a consultation with the European Working Group of People with Dementia.

Kim Baden-Kristensen from project lead partner Brain+ in Denmark presented the project in more detail during the Alzheimer’s Association Academy in Brussels in December.

AMYPAD

The "Amyloid imaging to prevent Alzheimer’s disease" project aims to improve the diagnostic workup of patients suspected to have Alzheimer's disease and their management. The consortium is led by Stichting VUmc and GE Healthcare Life Sciences. The partners aim to improve knowledge of the natural history of Alzheimer's disease in a pre-symptomatic stage, in order to better select patients for trials. In addition, they monitor changes in beta amyloid deposition in the brain in order to quantify the impact of novel therapies.

Alzheimer Europe was represented by Jean Georges, Cindy Birck and Dianne Gove in this project. In 2019, they:

  • represented Alzheimer Europe in the AMYPAD Executive Committee and its weekly telephone conference and its face-to-face meetings in London and Amsterdam
  • co-led the work package on ethics, communication and dissemination,
  • organised and chaired the monthly teleconference meetings,
  • coordinated the production and the regular maintenance of the communication tools (i.e. website, newsletter, Twitter, Research Gate, slide deck, YouTube),
  • provided social media support for AMYPAD presenters at selected international and European conferences,
  • attended the General Assembly meeting in Barcelona (Spain) and presented the projects’ communication and dissemination activities,
  • contributed to several telephone conferences of the ethics working group.

The AMYPAD project was also presented by José Luis Molinuevo at the 29th Alzheimer Europe Conference in The Hague and by Gill Farrar at the lunch debate organised in Brussels in December.

EPAD

The European Prevention of Alzheimer’s dementia (EPAD) initiative is a collaborative research effort to improve the chance of successfully preventing Alzheimer’s dementia and to better understand early aspects of Alzheimer’s disease before dementia develops. Led by the University of Edinburgh, the project established a European-wide register of research participants.

Alzheimer Europe was represented by Jean Georges, Cindy Birck and Dianne Gove in this project. In 2019, they:

  • co-led the work package on dissemination and participated in the monthly work package teleconferences
  • showcased the EPAD communication activities at a conference organised by the Innovative Medicines Initiative
  • coordinated the production and the regular maintenance of the communication and dissemination tools,
  • supported the Longitudinal Cohort Study activities (Trial delivery centre spotlight, flyers and brochures for TDCs and the set-up of TDCs webinars),
  • represented Alzheimer Europe in the Publications Approval Committee and Clinical Development Executive (CDEx),
  • attended a joint AMYPAD/EPAD ethics meeting in Rotterdam in April and contributed towards discussions within the ethics work package,
  • attended the General Assembly meeting in May in Geneva (Switzerland),
  • participated and contributed to the EPAD Change Management Team tasked with preparing the sustainability of the programme after the IMI funding period.

The EPAD project was also presented by Craig Ritchie at the 29th Alzheimer Europe Conference in The Hague.

MOPEAD

MOPEAD or “Models of Patient Engagement for Alzheimer’s Disease” aimed to identify and test models of efficient earlier identification of mild AD dementia and prodromal AD.

In this project, Alzheimer Europe mainly supported the dissemination activities of the project and was represented by Jean Georges, Christophe Bintener and Dianne Gove. In 2019, they:

  • contributed to a scientific publication presenting the project which was published in “Alzheimer’s and Dementia: The Journal of the Alzheimer’s Association”
  • regularly participated in the telephone conferences of the communications work package and contributed to the project’s dissemination activities
  • attended the final General Assembly in Cologne in October
  • organised a public event to present the project findings at the Alzheimer Europe lunch debate in Brussels in December
  • invited project partners to present the results of the four models of patient engagement at the Alzheimer’s Association Academy in December.
Neuronet

Neuronet is an IMI-funded coordination and support action (CSA), which received funding in 2019 and which aims to boost synergy and collaboration between IMI projects working on neurodegenerative diseases (NDD) such as Alzheimer’s disease and Parkinson’s disease. Neuronet aims to collect and analyse information and assets from the various NDD initiatives in the IMI portfolio, aiming to identify gaps, enhance visibility and multiply the impact of the portfolio as a whole. To achieve this, Neuronet will develop a knowledge base platform and a portfolio asset map, among other resources. The Neuronet consortium is led by SYNAPSE Research Partners and Janssen.

Alzheimer Europe was represented by Jean Georges, Christophe Bintener and Angela Bradshaw. In 2019, they:

  • co-led work package on dissemination and outreach
  • contributed to work packages on projects & impact analysis, programme integration), tools & services and CSA management and sustainability and co-authored a number of project deliverables
  • authored the Neuronet communication strategy and the first version of guidance on standards and practices for protecting data privacy
  • coordinated the production and the regular maintenance of the communication tools (i.e. website, newsletter, Twitter, slide decks)
  • coordinated and chaired meetings of the Communications Expert Community
  • organised and coordinated the Neuronet sessions at the Annual Conference of Alzheimer Europe in The Hague
  • attended the fortnightly teleconference meetings of the Executive Committee and monthly work package teleconference meetings
  • moderated the working group on patient privacy and ethics
  • participated in the working groups on data sharing, HTA/regulatory affairs and sustainability
  • attended the consortium meetings in Madrid (Spain) and Brussels (Belgium) and updated the consortium on the communication and dissemination activities
PACE

The aim of PACE was to compare the effectiveness of palliative care at the end of life for elderly people with and without dementia in long-term care facilities in Europe. The project came to an end in 2019.

Alzheimer Europe was mainly contributing to the communication activities of the project and was represented by Dianne Gove and Ana Diaz in this project. In 2019, they:

  • participated in the final workshop of the project “Palliative care for older people: why we all need to care, now” in Brussels in January
  • contributed to the policy recommendations in collaboration with AGE Platform

Lieve van den Block from project lead Vrije Universiteit presented the findings of the project at a meeting of the governmental experts on dementia convened by Alzheimer Europe in December.

PARADIGM

PARADIGM is a European IMI-funded project, which started in March 2018. PARADIGM seeks to improve patient engagement in the medicines lifecycle. Alzheimer Europe was part of this project and its role was to ensure that the voices of people affected by dementia were taken into account in the project.

Alzheimer Europe was primarily represented by Ana Diaz who contributed to all work packages of the project. In 2019, she:

  • contributed to the work packages on needs, expectations and aspirations in patient engagement, gap analysis, impact, tools and sustainability, including  participation in the regular teleconference meetings and co-authorship of deliverables 4.
  • attended the 1st PARADIGM General Assembly and 2nd Open Forum in Brussels with Dianne Gove, Angela Bradshaw and representatives of the European Working Group of People with Dementia
  • involved two members of the EWGPWD in the Delphi analysis and face-to-face workshop in Brussels to co-prioritise minimal expectations for patient engagement across all stakeholders, and participated in the webinar to disseminate this work.
  • contributed to the joint workshop of the work packages on expectations and gap analysis in Oxford in March
  • participated with Chris Roberts and Jayne Goodrick from the European Working Group of People with Dementia in a joint workshop of the work packages on impact and tools on the impact of patient engagement in Berlin in March
  • contributed to a social media campaign on the relevance of patient engagement
  • co-authored the paper “Evaluating the “return on patient engagement initiatives” in medicines research and development: A literature review” published in the Journal Health Expectations
  • attended the first Congress of the European Patients’ Forum in November in Brussels with Chris Roberts giving a plenary presentation on “Ensuring equity, inclusivity and diversity of the patients’ voice”.
  • co-led two working groups for the development of tools and templates for patient engagement (on the topics of Community Advisory Boards and reporting of patient engagement activities).
  • contributed towards a consultation with members of the European Working Group of People with Dementia in relation to the impact of patient engagement and metrics

Three members from the project (VU Amsterdam and EPF) presented the work of PARADIGM during the Alzheimer’s Association Academy in Brussels in December.

PRODEMOS

The PRODEMOS (Prevention of Dementia using Mobile phone Applications) project kicked off in January 2018. This project aims to make an evidence-based dementia prevention strategy using mobile Health accessible to those at increased risk of dementia who are usually not reached by preventive medicine. The project will target socio-economically deprived populations in the EU and a population at risk of dementia in China. The final aim is to implement the mHealth platform in a culturally appropriate form in a range of health care settings.

Alzheimer Europe supported the communication and dissemination activities and was represented by Jean Georges and Cindy Birck. In 2019, they:

  • attended the general assembly meetings held in Brighton and Cambridge (United Kingdom) in April and November
  • regularly participated in the monthly telephone conferences of the PRODEMOS WP leads.
RADAR-AD

The RADAR-AD (Remote Assessment of Disease and Release – Alzheimer’s disease) is a new project funded by the Innovative Medicines Initiative starting in 2019. The ultimate goal of the project is the development and validation of technology-enabled, quantitative and sensitive measures of functional decline in people with early stage Alzheimer’s disease.

Alzheimer Europe’s role in the project was to lead and support the patient and public involvement activities of the project. The organisation was represented by Dianne Gove and Ana Diaz in this project. In 2019, they:

  • attended the kick-off meeting of the project in London on 30 and 31 January,
  • organised a consultation of the European Working Group of People with Dementia in March on the definition and prioritisation of functional domains in Alzheimer’s disease and main features to consider when selecting a device for people with dementia
  • developed the Patient Advisory Board of the project bringing together members of the European Working Group of People with Dementia, carers and people with mild cognitive impairment
  • organised three consultations with members of the Patient Advisory Board in June (ethical issues), August (stigma and vulnerability) and December (recruitment and retention issues in the RADAR-AD trial)
  • involved members of the core Patient Advisory Board in the review of the Information Sheet and Consent Forms for study participants and study partners
  • developed a section on the RADAR-AD website about patient and public involvement and the work of the Patient Advisory Board
  • organised ongoing calls with relevant project partners to ensure the meaningful involvement of the members of the Patient Advisory Board
  • authored one deliverable on the topic of Stigma, vulnerability and misuse of Remote Monitoring Technology.

Dag Aarsland, the coordinator of the RADAR-AD project from King’s College London provided an overview of the project in a plenary lecture at the Alzheimer Europe Conference in The Hague and Andrew Owens presented the project during the during the Alzheimer’s Association Academy in Brussels in December.

VirtualBrainCloud

VirtualBrainCloud is a Horizon 2020-funded project led by Charité Universitätsmedizin Berlin which aims to create a cloud-based brain simulation platform to support personalised diagnostics and treatments for neurodegenerative diseases (NDD), in particular Alzheimer’s disease. VirtualBrainCloud also aims to develop robust legal and ethical solutions to ensure that patient data is used in a secure and ethical way.

Alzheimer Europe was represented by Jean Georges and Angela Bradshaw. In 2019, they:

  • contributed to the work packages on ethical and legal and on exploitation and dissemination
  • co-authored an analysis of the relevant legal, ethical and regulatory framework and a deliverable for the establishment of contacts with relevant external stakeholders
  • participated in bi-monthly teleconference meetings of the Legal/ethical helpdesk
  • participated in monthly teleconference meetings of the ethical and legal work package
  • attended the kick-off meeting in January (Berlin, Germany) and the General Assembly meeting in September (Barcelona, Spain)

Support of European research activities

In addition to the projects described above, Alzheimer Europe played a minor role and supported a number of other European research projects.

DISTINCT

DISTINCT (Dementia: Intersectorial Strategy for Training and Innovation Network for Current Technology) is an EU funded Marie Skłodowska-Curie Innovative Training Network which received funding in 2019. Coordinated by the University of Nottingham, the network brings together 13 research organisations which will host 15 early stage researchers who will focus on improving the usability of technology in dementia care.

Alzheimer Europe and its European Working Group of People with Dementia were involved in this project and the organisation was represented by Dianne Gove and Ana Diaz in this project. In 2019, they:

  • attended the kick-off meeting of the project in London (United Kingdom)
  • involved a member of the European Working Group of People with Dementia in the event for the recruitment of early stage researchers in London (United Kingdom)
MinD

Alzheimer Europe continued its involvement in the MinD (Designing for People with Dementia) project, which aims to help people with dementia engage in social contexts to improve psychosocial wellbeing. The concept of mindful design is used in the context of this project to investigate innovative design solutions, in order to enable self-empowerment and confidence building of people living with dementia.

Alzheimer Europe was represented by Dianne Gove, Ana Diaz, Chris Bintener, Owen Miller and Cindy Birck in this project. In 2019, they:

  • co-hosted with the University of Luxembourg two-week visit and secondments of project partners in Luxembourg in May and December
  • contributed to the policy recommendations developed by the researchers and provided feedback from the European Working Group of People with Dementia
  • involved a member of the European Working Group of People with Dementia as a keynote speaker at their final conference.

MinD researchers presented the outcomes and results of the project to the members of the European Working Group of People with Dementia at its December meeting.

MIRIADE

MIRIADE (Multi-omics Interdisciplinary Research Integration to Address DEmentia diagnosis) is another EU funded Marie Skłodowska-Curie Innovative Training Network which received funding in 2019. The project aims to generate a novel generation of scientists able to accelerate fluid biomarker development for dementias.

Alzheimer Europe’s role in the project was to support the dissemination and communication activities and provide secondments to two early stage researchers during the course of the project. The organisation was represented by Jean Georges who:

  • attended the kick-off meeting in Amsterdam on 11 November.
SPAN+

The SPAN+ project, which is led by Radboud University Medical Centre, aims to develop an effective empowerment intervention for people with dementia at home and in care homes.

Alzheimer Europe was represented by Dianne Gove and Ana Diaz in this project. In 2019, they:

  • organised a consultation with the European Working Group of People with Dementia on the empowerment model developed by the project.

Researchers from the project also presented the progress of the project at the Alzheimer’s Association Academy in December.

SyDAD

SyDAD (Synaptic Dysfunction in Alzheimer's Disease) is a European Training Network sponsored by Horizon2020 Marie Skłodowska-Curie Actions. The research programme supports 15 Early Stage Researchers (ESRs, PhD students) with an interest in the area of Alzheimer’s disease and synaptic dysfunction. The project is led by the Department of Neurobiology, Care Sciences and Society at Karolinska Institutet (Sweden).

Alzheimer Europe is a partner organisation in this project supporting the dissemination activities and was represented by Cindy Birck. In 2019, she

  • reported on the project’s workshop “Advanced methodology in preclinical Alzheimer’s research” in Bordeaux in January,
  • attended the annual meeting in Toulouse in March.

Corporate affairs

European Parliament lunch debates

In 2019, Alzheimer Europe organised two successful lunch debates in the European Parliament in Brussels:

  • On 26 February 2019, Anneli Jäätteenmäki, MEP (Finland) hosted a lunch debate in the European Parliament on “Dementia as a European research priority”. The meeting was organised in collaboration with the University of Eastern Finland with presentations from Pierre Meulien, the Executive Director of the Innovative Medicines Initiative, Mikka Hiltunen, Professor at the University of Eastern Finland and Stephane Hogan, Head of Sector for Neuroscience at the Directorate General for Research and Innovation at the European Commission.
  • The lunch debate on 10 December 2019 on “Improving the diagnosis of dementia – Findings from European research collaborations” was hosted by Sirpa Pietikäinen, MEP (Finland) with contributions from Pierre Krolak-Salmon (Institut du Vieillissement, Lyon, France) on the 2nd Joint Action on Dementia, Mercè Boada (Fundació Ace, Spain) on the MOPEAD project and Gill Farrar (GE Healthcare, United Kingdom) on AMYPAD.

Both lunch debates were well-attended, with representatives from the European Parliament and Commission, AE member associations and the organisation’s sponsors.

Dementia in Europe magazine

In 2019, Alzheimer Europe published three issues of the Dementia in Europe magazine in which the organisation reported on its lunch debates in the European Parliament, its campaign encouraging candidates in the European elections to sign its European Dementia Pledge and the European research projects the organisation participates in.

The magazines featured a variety of articles on policy developments, including interviews with the following national and European policy makers:

  • Debbie Abrahams, MP, Co-Chair of the All Party Parliamentary Group on Dementia (United Kingdom)
  • Martina Andersson, MEP (Northern Ireland, United Kingdom)
  • Matt Carthy, MEP (Ireland)
  • Deirdre Clune, MEP (Ireland)
  • Marian Harkin, MEP (Ireland)
  • Hugo de Jonge, Minister of Health, Welfare and Sport (Netherlands)
  • Karin Kadenbach, MEP (Austria)
  • Merja Kyllönen, MEP (Finland)
  • Sirpa Pietikäinen, MEP (Finland)
  • Paul Rübig, MEP (Austria)
  • Marianne Thyssen, EU Commissioner for Employment, Skills, Social Affairs and Labour Mobility
  • Hilde Vautmans, MEP (Belgium)
  • Julie Ward, MEP (United Kingdom)

The 2019 issues included a.o. articles on the European Accessibility Act, the European Social Pillar, the plans for the development of a German national dementia strategy and the Spanish National Alzheimer’s Plan, the WHO Global Action Plan on dementia and data sharing.

Clinical Trial Watch

In 2019, Alzheimer Europe continued with the development of its Clinical Trials Watch which provides accessible and up-to-date information on clinical trials that are investigating drugs for Alzheimer’s disease and other types of dementia. In 2019, Alzheimer Europe focused on clinical trials that were:

  • Recruiting participants
  • Conducted in at least one European country
  • In phase II or phase III.

At the end of 2019, 16 phase II and 12 phase III clinical trials recruiting participants in Europe were included on the AE website.

In 2019, thanks to the support of Janssen, Alzheimer Europe also produced s special supplement to issue 31 of its Dementia in European magazine dedicated to “Clinical trials on Alzheimer’s disease in Europe” and organised a special symposium at its Annual Conference in The Hague with the participation of Brian Inglis, a research participant of the EPAD project, Simon Lovestone, Vice President at Janssen Global R&D and Philip Scheltens, Director of the Alzheimer Centre in Amsterdam.

Data sharing initiative

Thanks to an educational grant from Gates Ventures, Alzheimer Europe started a mapping exercise of European research projects with a focus on their data sharing practices. The aim of the project is to understand the legal framework, the facilitators and barriers to data sharing, as well as the perceptions of scientists, research participants and the general public towards data sharing and develop recommendations for policy makers.

During the Alzheimer Europe Conference in The Hague, Alzheimer Europe organised a special symposium on data sharing which gave a broad overview of the state-of-the-art on health data sharing from clinical research to data protection with a special focus on the views of patients. The invited speakers were Pieter Jelle Visser, Associate Professor at the Alzheimer Centre in Amsterdam, Manuela Mayrhofer of the Biobanking and Biomolecular Resources Research Infrastructure and Nicola Bedlington from the European Patients’ Forum.

This project is coordinated by Angela Bradshaw and in 2019, she:

  • presented an overview of the data sharing initiative at an Alzheimer Europe Public Affairs meeting in Brussels
  • contributed an article on data sharing to the “Dementia in Europe” magazine
  • created new links with the “DataSavesLives” initiative (a multi-stakeholder initiative aimed at raising wider patient and public awareness of health data) and the European Institute for Innovation for Health Data (I~HD)
  • regularly updated Gates Ventures on the progress of the exercise in bi-monthly teleconference meetings with Gates Ventures team members based in Paris and Washington D.C.

Meetings organised by AE in the framework of the 2019 Operating Grant

Date

Meeting

Venue

25-26 February

AE Board

Brussels, Belgium

27 February

AE Public Affairs meeting

Brussels, Belgium

18-20 March

European Working Group of People with Dementia

Munsbach, Luxembourg

3 May

AE Ethics working group meeting

Amsterdam, Netherlands

24-25 June

AE Board

Brussels, Belgium

25-27 June

European Working Group of People with Dementia

Brussels, Belgium

26 June

AE Public Affairs meeting

Brussels, Belgium

28-29 August

European Working Group of People with Dementia

Brussels, Belgium

23 October

Second AE Ethics working group meeting

The Hague, Netherlands

23 October

AE Board

The Hague, Netherlands

23 October

AE Annual General Meeting

The Hague, Netherlands

23-25 October

AE Conference “Making valuable connections”

The Hague, Netherlands

9-10 December

AE Board

Brussels, Belgium

10-11 December

Alzheimer's Association Academy meeting

Brussels, Belgium

10-12 December

European Working Group of People with Dementia

Brussels, Belgium

Meetings attended by AE in the framework of the 2019 Operating Grant

Date

Meeting

Venue

16-17 January

Conference field visit

Bucharest, Romania

21 January

Site inspection for Hotels in Brussels

Brussels, Belgium

19-20 February

2nd Joint Action on Dementia meeting

Edinburgh, United Kingdom

21 February

Meeting with Lufthansa Group

Luxembourg, Luxembourg

8-9 April

2nd Joint Act on Dementia meeting

Oslo, Norway

2 May

Meeting with Alzheimer Nederland

Amersfoort, Netherlands

6 May

European Commission’s Scientific Panel for Health forum

Brussels, Belgium

1-2 June

European Disability Forum’s (EDF) Annual General Assembly

Brussels, Belgium

17-18 June

Meeting of the European Governmental Expert Group on Dementia

Amsterdam, Netherlands

18 June

2nd Joint Action on Dementia meeting

Amsterdam, Netherlands

8-9 July

Conference field visit with Alzheimer Nederland

The Hague, Netherlands

4-7 September

Conference field visit

Helsinki, Finland

9-10 September

WHO Dementia Meeting

Valetta, Malta

24-25 September

Meeting of the Patients’ and Consumers’ Working Party of the European Medicines Agency

Amsterdam, Netherlands

16-19 September

WHO Regional Committee for Europe

Copenhagen, Denmark

30 September

EU Health Programme High Level Conference

Brussels, Belgium

12-13 November

EPF Congress “Advancing meaningful patient involvement”

Brussels, Belgium

20 November

Meeting of the Patients and Consumers Working Party of the European Medicines Agency

Amsterdam, Netherlands

10-11 December

Meeting of the European Governmental Expert Group on Dementia

Brussels, Belgium

Other meetings organised by AE or attended by AE representatives in 2019

Date

Meeting

Venue

17 January

PARADIGM project meeting

Brussels, Belgium

22 January

Meeting with EFPIA representatives

Brussels, Belgium

23 January

Meeting of the European Academy of Neurology (EAN) and the European Federation of Neurological Associations (EFNA)

Brussels, Belgium

24 January

PACE project workshop

Brussels, Belgium

25 January

VirtualBrainCloud project kick-off meeting

Berlin, Germany

30-31 January

RADAR-AD project kick-off meeting

London, United Kingdom

4-5 February

EPAD project meeting

Berlin, Germany

14 February

Meeting with Roche

Luxembourg, Luxembourg

15 February

AMYPAD project meeting

Amsterdam, Netherlands

25 February

AE Foundation Board

Brussels, Belgium

26 February

AE Lunch Debate

Brussels, Belgium

26 February

AE Company Round table

Brussels, Belgium

6-7 March

SyDAD project meeting

Toulouse, France

20 March

World Down Syndrome Day 2019 at Parliament

Brussels, Belgium

21 March

Neuronet project  kick-off

Madrid, Spain

22 March

AD-DETECT-Prevent project meeting

Copenhagen, Denmark

26-31 Match

AD/PD conference

Lisbon, Portugal

27-28 March

PARADIGM project Workshops

Berlin, Germany

29 March

Roche Patient meeting

Lisbon, Portugal

2 April

IMI Communications event

Brussels, Belgium

5 April

Meeting with World Dementia Council

Luxembourg, Luxembourg

10-11 April

PRODEMOS project meeting

Brighton, United Kingdom

12 April

North Sea Dementia Group project meeting

Stuttgart, Germany

15 April

Meeting for development of Marie Skłodowska-Curie Innovative Training Network proposal

Berlin, Germany

16 April

EPAD/AMYPAD projects ethics meeting

Rotterdam, Netherlands

18 April

Essity roundtable

Brussels, Belgium

25 April

ESCR/NIHR Neighbourhoods and Dementia study end-of-project conference

Manchester, United Kingdom

6-17 May

MinD study secondment

Belval, Luxembourg

8-11 May

M&I Forum

Monchique, Portugal

20 May

EuropaBio’s Patient BioForum

Brussels, Belgium

30 May

AMYPAD project meeting

London, United Kingdom

4-5 June

Task Force meeting of the European Academy of Neurology

Vienna, Austria

4 June

EFPIA Think Tank Workshop

Brussels, Belgium

5 June

EFPIA Think Tank meeting

Brussels, Belgium

12 June

IMI Stakeholder Forum

Brussels, Belgium

25 June

AE Company Round table

Brussels, Belgium

2-3 July

Neuronet project meeting

Madrid, Spain

3 July

Meeting for development of Marie Skłodowska-Curie Innovative Training Network proposal

London, United Kingdom

4 July

EPAD project meeting

London, United Kingdom

5 July

GSK Health Advisory Board meeting

London, United Kingdom

8 July

Meeting with a representative from the World Young Leaders in Dementia

Luxembourg, Luxembourg

9 July

Roche workshop

Basel, Switzerland

11-12 July

Patient Access Partnership meeting

Brussels, Belgium

12 July

WW-Fingers project meeting

Los Angeles, USA

13 July

Patient Advisory Board meeting Eisai

Los Angeles, USA

14-18 July

AAIC conference

Los Angeles, USA

17 July

International Alzheimer's Disease Research Funders Consortium meeting

Los Angeles, USA

26 July

ADDIA project meeting

Paris, France

6 September

VirtualBrainCloud project meeting

Barcelona, Spain

17 September

Inaugural Health Data Community meeting

Brussels, Belgium

18 September

PARADIGM project meeting

Brussels, Belgium

18-19 September

PARADIGM, PFMD and EUPATI Patient Engagement Forum

Brussels, Belgium

1-2 October

MOPEAD project meeting

Cologne, Germany

7 October

Neuronet project meeting

Diegem, Belgium

8 October

BBDiag project meeting

Milan, Italy

10-11 October

AMYPAD project meeting

Barcelona, Spain

11 October

EPAD project meeting

London, United Kingdom

16 October

MEP Alliance meeting

Brussels, Belgium

21-22 October

European Alzheimer’s Disease Consortium meeting

The Hague, Netherlands

23 October

Meeting for development of Marie Skłodowska-Curie Innovative Training Network proposal

The Hague, Netherlands

23 October

INTERDEM meeting

The Hague, Netherlands

23 October

Neuronet project meeting

The Hague, Netherlands

23 October

DZNE EU-atlas on dementia & migration workshop

The Hague, Netherlands

12 November

MIRIADE project meeting

Amsterdam, Netherlands

12 November

Conference organised by Robert Bosch Stiftung on dementia in hospitals.

Berlin, Germany

13 November

Conference on the end of life

Luxembourg, Luxembourg

13-14 November

Lausanne VI meeting

Lausanne, Switzerland

15 November

EPAD project change management team meeting

Amsterdam, Netherlands

16-18  November

ICCA Forum for Young Professionals

Barcelona, Spain

19-20 November

IBTM trade show

Barcelona, Spain

19 November

Multi-stakeholder seminar organised by ISC Intelligence

Barcelona, Spain

20 November

Neuronet project meeting

Madrid, Spain

25-26 November

PRODEMOS project meeting

Cambridge, United Kingdom

26 November

Workshop “The role of patient’s organizations in scientific and technological research"

Madrid, Spain

27-28 November

JPND conference

Brussels, Belgium

27-28 November

Conference of the European Institute for Innovation through Health Data

Brussels, Belgium

4-7 December

CTAD Conference

San Diego, USA

4 December

Meeting with Biogen and AbbVie

San Diego, USA

5 December

EBRA Year 1 Public event

Brussels, Belgium

5 December

Meeting with Nutricia

San Diego, USA

10 December

Alzheimer Europe Lunch Debate

Brussels, Belgium

10 December

Alzheimer Europe Company Round Table meeting

Brussels, Belgium

12 December

GSK Health Advisory Board meeting

Wavre, Belgium

17 December

Meeting on ethical/privacy/data protection certification of ICT solutions by the Ambient Assisted Living Programme

Brussels, Belgium

18 December

EPAD project meeting

Brussels, Belgium

 

 
 

Last Updated: Tuesday 06 October 2020

 

 
 

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