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


Kieran BreenR&D DirectorParkinson’s UK and the European Parkinson’s Disease Association
Audrey CravenPresidentEuropean Headache Alliance
Beatrice De SchepperPresidentEuropean Huntington Association
Annette DumasEU Public Affairs OfficerAlzheimer Europe
Frank GoodwinSecretaryEurocarers
Asunción MartínezPresidentInternational Huntington Association
Sue MillmanGeneral SecretaryEuro-Ataxia
Anne-Sophie ParentSecretary GeneralAGE Platform Europe
Evy ReviersDirectorInternational Alliance of ALS/MND associations
Gillian TurnerNational CoordinatorCJD Support Network, UK and member of the CJD International Support Alliance
Amanda WorpoleExecutive DirectorEuropean Federation of Neurological Associations
JPND Observers
Philippe AmouyelJPND ChairINSERM, France
Rob BuckleJPND Management BoardUK Medical Research Council
Caitriona CreelyJPND Programme ManagerHealth Research Board, Ireland
Derick MitchellJPND Communications ExecutiveHealth Research Board, Ireland
Catherine MoodyJPND Programme ManagerUK Medical Research Council
Jorge Pinto AntunesPolicy Officer, DG-SANCOEuropean Commission
Manuel RomarisPolicy Officer, DG-ResearchEuropean Commission
Martin RossorVice-Chair, JPND Scientific Advisory BoardInstitute of Neurology, University College London
Micol ZappaJPND Programme ManagerMinistero dell’Istruzione, de ll’Università e della Ricerca, Italy