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 |