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Patient and Carer Meeting

In order to obtain perspectives from patient and carer organisations, JPND held a consultation meeting on May 26th, 2011 at the Club University Foundation, Brussels which aimed to identify patient-centred priorities for JPND research.

The consultation brought together representatives from pan-European patient and carer organisations including those groups with specific interest in the neurodegenerative diseases that the JPND research agenda is focusing on.

Download the meeting report here

Chairperson: Martin Rossor, University College London

Presentations: Click on presentation title to download slides (pdf)

1. Introduction - Philippe Amouyel

2. Added Value of Patient Partnership in ND Research - Amanda Worpole

3. Delivery of the SRA - Catherine Moody

4. JPND Mapping Exercise - Caitriona Creely

5. Expert Workshop Outputs - Martin Rossor

6. Next Steps - Derick Mitchell

Participants:

Name Position Affiliation
Kieran Breen R&D Director Parkinson's UK and the European Parkinson’s Disease Association
Audrey Craven President European Headache Alliance
Beatrice De Schepper President European Huntington Association
Annette Dumas EU Public Affairs Officer Alzheimer Europe
Frank Goodwin Secretary Eurocarers
Asunción Martínez President International Huntington Association
Sue Millman General Secretary Euro-Ataxia
Anne-Sophie Parent Secretary General AGE Platform Europe
Evy Reviers Director International Alliance of ALS/MND associations
Gillian Turner National Coordinator CJD Support Network, UK and member of the CJD International Support Alliance
Amanda Worpole Executive Director European Federation of Neurological Associations
     
JPND Observers    
Philippe Amouyel JPND Chair INSERM, France
Rob Buckle JPND Management Board UK Medical Research Council
Caitriona Creely JPND Programme Manager Health Research Board, Ireland
Derick Mitchell JPND Communications Executive Health Research Board, Ireland
Catherine Moody JPND Programme Manager UK Medical Research Council
Jorge Pinto Antunes Policy Officer, DG-SANCO European Commission
Manuel Romaris Policy Officer, DG-Research European Commission
Martin Rossor Vice-Chair, JPND Scientific Advisory Board Institute of Neurology, University College London
Micol Zappa JPND Programme Manager Ministero dell'Istruzione, de ll'Università e della Ricerca, Italy

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