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
 
 
La voce dei malati rari in EuropaEURORDIS Rare Diseases International, la voce internazionale dei malati rariRare Disease International RareConnect è un'iniziativa di EURORDIS che mette in contatto malati, famiglie ed esperti per condividere esperienze in un forum multilingua e moderato RareConnect Il Programma Rare Barometer è un’iniziativa di EURORDIS volta a condurre indagini con l’obiettivo di trasformare le esperienze delle persone affette da malattie rare in cifre e fatti che possono essere condivisi con i decisori politici.Rare Barometer La Giornata delle Malattie Rare, una campagna di sensibilizzazione internazionale che si svolge l'ultimo giorno di febbraio di ogni anno.Rare Disease Day La Conferenza Europea biennale sulle Malattie Rare è il più grande incontro di soggetti interessati al tema delle Malattie Rare in Europa. L'ECRD è un'iniziativa di EURORDISEuropean Conference on Rare Diseases