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NEWSLETTER May 2010 NEWSLETTER May 2010 dementia plans, which will take Highlights in this issue Editorial place on 22 June. 14 May 2010: Play about I would like to Work is progressing well on our Rita Hayworth’s life with extend a warm different projects, such as the 10 Alzheimer’s disease welcome to literature review on the ethical performed Elena Oana implications of assistive Antonescu, technologies or the 27 May 2010: Alzheimer MEP from establishment of national medication may be 4 Romania and reports on proxy-decision reimbursed in Bulgaria thank her for making in dementia. joining the other 46 MEPs who 30 May 2010: Poster by In May, Annette and I attended have become members of the the Finnish Alzheimer 6 an expert meeting convened by European Alzheimer’s Alliance Society wins award the Belgian Ministry of Health from 16 European Union for the preparations of a Belgian countries. Presidency Conference on the Raising awareness of the societal aspects of dementia disease itself and the issues and the research paper which surround it plays a presented by Professor Murna fundamental part of our Down highlighted a number of members’ work. This month is interesting policy approaches to no different and we report on destigmatise dementia and our members’ activities from improve the quality of life of Finland, Greece, Ireland, both people with dementia and Portugal and the UK (both in their carers. This will definitely England and in Scotland). be a Conference to look forward to. Greater understanding of the Table of contents disease can also be gained by In this newsletter, we also report on two meetings Editorial....................................... 1 hearing people describe how it has affected their lives. This organised by the European European Alzheimer’s Alliance ......... 2 month we report on John Patients’ Forum. As a founding Alzheimer Europe Networking .......... 2 Suchet’s moving observations member of the Forum, of caring for his wife, Bonnie, Alzheimer Europe continues to European developments.................. 3 who has Alzheimer’s. We also believe in the need of a strong Other European organisations.......... 3 bring news of a play about the and united patients’ voice in life of Rita Hayworth and her Europe and we are delighted to Policy Watch................................. 3 struggle with the disease. The report on the organisation’s Members’ News............................. 4 contrast between her on screen continued good health both in life and battle with Alzheimer’s its past activities, future plans Science Watch .............................. 6 disease provides a stark and financing. Dementia in Society ..................... 10 reminder of the fact that Finally, as always we bring you dementia can strike anyone at New resources and publications ..... 11 a selection of research news on any time. AE Calendar ............................... 12 the genetics, prevention and In the office we continue to treatment of Alzheimer’s Future Conferences...................... 12 prepare for our forthcoming disease and other forms of conference in September and I dementia. It is truly encouraging take this opportunity to remind to see the amount of research readers that our call for that we can report on a weekly abstracts closes on 30 June. basis. Early bird registration is also still available and you can register Jean Georges at a reduced rate until 31 July. Executive Director We have also started preparations for our lunch debate in the European Parliament on national Page 1 of 13 Newsletter: May 2010 European Germany Niebler Angelika (EPP), Roth-Behrendt Dagmar Alzheimer’s Alliance (S&D), Ulmer Thomas (EPP), Weisgerber Anja (EPP) Greece In April, Antonescu Elena Oana Chountis Nikolaos (GUE-NGL), Koppa Maria Eleni (Romania) joined the European (S&D), Kratsa-Tsagaropoulou Rodi (EPP) Alzheimer’s Alliance, which brings the total number of Ireland MEPs in the Alliance to 46, representing 16 Member States Aylward Liam (ALDE), Childers Nessa (S&D); of the European Union and six Crowley Brian (ALDE), McGuiness Mairead (EPP), of the seven political groups in Mitchell Gay (EPP) the European Parliament. Italy Antonescu The members of the European Panzeri Pier Antonio (S&D), Toia Patrizia (S&D) Elena Oana Alzheimer’s Alliance are the (Romania, EPP) following: Luxembourg Belgium Lulling Astrid (EPP) Brepoels Frieda (Greens/EFA), Ries Frédérique Netherlands (ALDE), Staes Bart (Greens/EFA), Sterckx Dirk (ALDE) De Lange Esther (EPP), van Nistelrooij Lambert (EPP), Wortmann-Kool Corien (EPP) Cyprus Portugal Triantaphyllides Kyriacos (GUE-NGL) Coelho Carlos (EPP) Czech Republic Romania Cabrnoch Milan (ECR), Kohlicek Jaromir (GUE/NGL), Roithova Zuzana (EPP) Antonescu Elena Oana (EPP) Denmark Slovakia Schaldemose Christel (S&D) Mikolasik Miroslav (EPP), Zaborska Anna (EPP) Finland United Kingdom Jaakonsaari Liisa (S&D), Jäätteenmäki Anneli Hall Fiona (ALDE), Lynne Liz (ALDE), McAvan Linda (ALDE), Pietikäinen Sirpa (EPP) (S&D), Moraes Claude (S&D), Simpson Brian (S&D), Watson Graham (ALDE), Willmott Glenis (S&D). France Audy Jean-Pierre (EPP), De Veyrac Christine (EPP), Griesbeck Nathalie (ALDE), Grossetête Françoise (EPP), Morin-Chartier Elisabeth (EPP) Alzheimer Europe Networking On 4 May (Brussels, Belgium), Jean and Annette attended the Belgian Presidency expert meeting on dementia. On 4 May (Brussels, Belgium), Annette attended the European Parliament Environment and Health Committee meeting to hear Commissioner Dalli's Work Plan for 2010. On 5 May (Berlin, Germany), Jean attended a Recognition Programme meeting and gave a presentation on Alzheimer Europe’s campaign to make dementia a European priority. On 6 May (Brussels, Belgium), Annette attended the Patients’ Rights Day organised by Active Citizenship in the European Parliament. On 11 May (Brussels, Belgium), Annette attended the STOA meeting on ageing research in the European Parliament (FUTURAGE, a roadmap for ageing research). On 13 May (Luxembourg, Luxembourg), Jean met with Ruth Bosworth from Pfizer. On 18 May (Brussels, Belgium), Annette attended the European Patients' Forum Health Technology Assessment seminar. On 19 May (Brussels, Belgium), Annette represented Alzheimer Europe at the European Patients' Forum General Assembly meeting. On 25 May (Brussels, Belgium), Annette met with Roxana Radulescu (European Patients’ Forum Senior Policy Advisor). Page 2 of 13 Newsletter: May 2010 19 May 2010: European Patients’ Forum European holds its AGM The European Patients' Forum (EPF) General developments Assembly Meeting took place in Brussels on 19 May 2010. EPF received a warm welcome from its Here we report on developments from the European members for its work carried out in 2009, its 2010 institutions which may impact people with dementia work plan, its European policy work and the and/or their carers. management of its funds. 20 May 2010: European Commission Working groups were organised to focus on two launches second stage social partner questions 1) how can EPF membership best guide, consultation on electromagnetic field strengthen and reinforce EPF to the benefit of all of legislation its members and 2) where would the EPF be in 2020 The European Commission launched a 2nd stage as a European Patients' Movement ? consultation with European social partners on 20 In a closing speech, Commissioner Dalli's May 2010 to seek their views on the electromagnetic representative reiterated the Commissioner's field legislation. commitment to put patients high on the European The aim is to improve Directive 2004/40/EC of 29 Commission's agenda and work with patients. He April 2004 on the minimum health and safety touched upon the economic crisis and feared some requirements regarding the exposure of workers to difficult decisions would need to be made. It will be the risks arising from physical agents necessary to establish priorities in terms of limited (electromagnetic fields). budgets. Health promotion and prevention will empower people to make healthy choices. As Based on the outcomes of this consultation and other a healthy population goes hand in hand with a elements such as new scientific recommendations healthy economy, it will be worthwhile investing in and studies, the Commission will prepare a health. comprehensive socio-economic impact assessment before adopting a new legislative proposal. On a question from the audience regarding the funding of patient groups, Commissioner Dalli said Consultation deadline : 5 July 2010. that it is very likely that the 25% level of industry funding for patient organisations being eligible to EU funding will be maintained. The way forward would Other European be the setting up of a Foundation. In this respect, the Norwegian model was said to be an interesting organisations model. Here we cover the news from independent European organisations such as the European Patient’s Forum, We provide full references to (rather than official bodies of the EU) articles on our website. Please visit 18 May 2010: Seminar on Health the completely revised Alzheimer Technology Assessment held Europe website on: The European Patients' Forum (EPF) seminar on www.alzheimer-europe.org Health Technology Assessment (HTA)took place in Brussels on 18 May 2010. The seminar's aim was to redress the limited knowledge and know-how the patient community has on the science and rationale Policy Watch behind HTA. With speakers from the European In this section you can find articles on various Commission, patient organisations, industry and national policies and initiatives which can
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