RD-Connect Joint Patient Advisory Council (RD-PAC)
RD-Connect is a global infrastructure that links –omics data with clinical data and available biomaterials to better understand rare diseases and ultimately lead to improved diagnostics and treatments. This infrastructure supports rare disease research worldwide, in particular research funded under the International Rare Diseases Research Consortium (IRDiRC) beginning with the EURenOmics and NeurOmics projects.
The importance and success of patient representation in rare disease research project governance has been demonstrated. A Joint Patient Advisory Council (RD-PAC) has been established by EURORDIS in the RD-Connect project (coordinating activities with the EUrenOmics and NeurOmics patient representatives) to inform all project coordinators and partners of issues important to patients and guaranteeing a patient-centric approach throughout project activities.
This group contributes the patient perspective to pragmatic solutions for the ethical, legal and social issues raised by –omics research as well as by the integration and sharing of research results and patient data. The RD-Connect, EUrenOmics and NeurOmics projects are navigating new research territory that requires capacity building and the RD-PAC also serves as a platform for education.
Name
|
Association
|
Country
|
Odile Perrousseaux |
French HD Association/International HD Association |
France |
Dorthe Lykke
|
European Federation of Hereditary Spastic Paraplegia
|
Denmark
|
Balthasar Schapp
|
European Federation for Neurological Associations/EuroAtaxia
|
Netherlands
|
Inge Schwersenz
|
Spinal Muscular Atrophy Europe
|
Germany
|
Joseph Irwin
|
Spinal Muscular Atrophy Support UK
|
United Kingdom
|
Muriel Gevrey
|
French Charcot Marie Tooth Association
|
France
|
Francoise Rouault
|
French Association for Muscular Dysrophies (AFM)
|
France
|
Marita Pohlschmidt
|
Muscular Dystrophy Campaign
|
United Kingdom
|
Elizabeth Vroom
|
United Parent Project Muscular Dystrophy
|
Netherlands
|
Marieke van Meel
|
NephcEurope
|
Netherlands
|
Daniel Renault
|
Federation of European associations of patients affected by Renal Genetic diseases
|
Europe (France)
|
Tracy Dudding
|
Rare Voices
|
Australia
|
Sigurður Jóhannesson
|
Alternating Hemiplegia association of Iceland (AHCAI)/AHCFE Europe
|
Iceland
|
Julian Isla
|
Dravet Syndrome Foundation
|
Spain
|
Kay Parkinson
|
Alstrom Syndrome UK
|
United Kingdom
|
Oliver Timmis
|
AKU Society
|
United Kingdom
|
Chris Sotirelis
|
UK Thalassemia Society
|
United Kingdom
|
Lydia Lemonnier
|
Vaincre la Mucoviscidose
|
France
|
Page created: 02/05/2014
Page last updated: 06/11/2014