In August 2016, three Constituent Committees were created, a Funders Constituent Committee, Companies Constituent Committee and a Patient Advocates Constituent Committee, in order to better coordinate, enhance information exchange, identify common goals, and advance towards IRDiRC objectives within the different constituent groups.
Dr Daria Julkowska, representing ANR, the national French research agency, and Coordinator of E-Rare, has been elected as Chair of the Funders Constituent Committee. She brings with her a wealth of experience concerning the coordination and management of international research funding programs for rare diseases, and the development of partnerships between funding agencies. She will be supported by Professor Hugh Dawkins, Vice-Chair of the Funders Constituent Committee, and Vice Chair of the IRDiRC Consortium Assembly, and Director of the Office of Population Health Genomics (OPHG), Western Australian Department of Health.
Dr David Thomson was elected as Chair of the Companies Constituent Committee. He is Senior Vice President and Global Head of Research and Nonclinical Development at Shire. He has a large experience in the pharmaceutical industry, with various responsibilities, such as the responsibility for initiating new research programs and external partnerships.
Ms Sharon Terry was elected as Chair of the Patient Advocates Constituent Committee, where she will serve with Vice Chair Ms Béatrice de Montleau. Sharon Terry is President and CEO of Genetic Alliance, and founder of PXE International, a research advocacy organization for the genetic condition pseudoxanthoma elasticum (PXE), in response to the diagnosis of PXE in her two children in 1994. She has been at the forefront of patient advocacy participation in research for many years. Béatrice de Montleau is a Board Member of EURORDIS-Rare Diseases Europe.
With the election of the Chairs of the Constituent Committees, IRDiRC is confident to have made a step in the right direction, to advance towards the fulfillment of new goals and objectives, and to contribute to the next phase of IRDiRC.