Author: tanguy.onakoy

IRDiRC Interview Series: Marjon Pasmooij

In the context of the IRDiRC Interview Series, Marjon Pasmooij’s interview is now available.  Marjon is a member of IRDiRC’s Therapies Scientific Committee and Science Programme Manager at Medicines Evaluation Board (CBG/MEB), University Medical Center Groningen, The Netherlands. Watch the full interview here

Read More

Join IRDiRC’s Therapies Scientific Committee!

IRDiRC has four Scientific Committees, one each for Diagnostics, Therapies, Interdisciplinary, and Regulatory aspects of rare diseases research. The Therapies Scientific Committee (TSC) is a multi-stakeholder, multi-disciplinary group of experts in medical research and therapy development in rare diseases. Specifically, the TSC is devoted to pursuing the therapeutic development of IRDiRC, supporting the rare diseases […]

Read More

FDA Rare Neurodegenerative Disease Grant Program

In addition to the Orphan Products Grants Program that the Office of Orphan Products Development (OOPD) currently administers, a new grant program was established this year by the Accelerating Access to Critical Therapies for Amyotrophic Lateral Sclerosis Act (ACT for ALS) named the FDA Rare Neurodegenerative Disease Grant Program. This new program will be administered […]

Read More

IRDiRC Interview Series: Stefano Benvenuti

In the context of the IRDiRC Interview Series, Funders Constituent Committee member and Fondazione Telethon’s Head of Affairs Stefano Benvenuti’s interview is now available. “IRDiRC is a great opportunity for knowing more and doing your job better” says Stefano Benvenuti. Watch the full interview here

Read More

IRDiRC Announces Creation of Regulatory Scientific Committee to Tackle Regulatory Challenges in Rare Diseases Research – Press Release

22 September 2022 – Paris, France – IRDiRC, a global collaborative initiative with the vision to enable all people living with a rare disease to receive an accurate diagnosis, care, and available therapy within one year of coming to medical attention, today announced the formation of the Regulatory Science Committee (RSC). “IRDiRC recognizes that the fast-moving pace […]

Read More