Skip to content
Generic filters
Exact matches only
Search in title
Search in content
Search in excerpt

A busy agenda for the Rare Disease Research Consortium in 2012 and 2013

November 2012

The International Rare Diseases Research Consortium (IRDiRC) had the second meeting of its Executive Committee at the end of September in Evry, France. The meeting was hosted by one of EURORDIS’ founding members, the AFM Téléthon, at their Genethon centre of excellence in research into vectorology and gene therapy. The venue is symbolic of the important role of patients in the Consortium and of the research advances that are being spearheaded by patient organisations themselves.

25 members of the Executive Committee met to discuss governance aspects, in particular the road map to complete the policy agenda on which all future policy of the Consortium, including the funding criteria of participating partners, will be based.  This policy document will be approved in January 2013.

At the meeting, it was announced that the first IRDiRC Conference will take place on 16-17 April 2013 in Dublin, Ireland under the Irish EU Presidency.  It was also the occasion to unveil the Consortium’s new logo and launch the creation of its Secretariat, which will be based at the Plateforme Maladies Rares in Paris, where EURORDIS and Orphanet are located.  This Secretariat will be headed by Dr Ségolène Aymé for the INSERM and Dr. Nicolas Lévy for the Rare Disease Foundation.


Paul Lasko, Scientific Director of the Canadian Institutes of Health Research was elected as Chair of the Consortium for the next year.  He succeeds Dr Ruxandra Draghia-Akli of the European Commission who chaired it for the past year and has been the engine behind it since its inception. The other members of the Executive Committee represent the European Commission, the National Institutes of Health, national research agencies, industry and patient organisations.  Béatrice de Montleau, Board Member and mother of a teenager affected by Duchenne Muscular Dystrophy, represents EURORDIS. 

Currently chaired by the European Commission, the Executive Committee of the IRDiRC gathers more than 30 leaders of public or private organisations funding rare disease research to help guide the Consortium’s members’ future research efforts. The IRDiRC’s initiative was launched in spring 2011. It brings together organisations ready to invest, over a 5-year period, more than $10 million US dollar (7.6 million EUR) into rare disease research following the Consortium’s research policy; as well as three-patient umbrella organisations: EURORDIS, NORD and Genetic Alliance.

Watch IRDIRC’s video presentation, featuring EURORDIS’ patient representative Béatrice de Montleau

Find more information on the European Commission’s DG Research and Innovation website

Read a previous EURORDIS eNews on the IRDIRC