Category: IRDiRC

The National Institute of Neurological Disorders and Stroke (NINDS) recently created the Ultra-Rare Gene-Based Therapy (URGenT) Network. The URGenT Network supports the development of state-of-the-art gene-based therapies for ultra-rare neurological diseases, […]

Rare Diseases International (RDI) would like to thank all who attended the RDI Informal Side-Event to the 75th World Health Assembly, which took place in Geneva, Switzerland, on May 24th, 2022. […]

The National Institutes of Health (NIH), National Center for Advancing Translational Sciences (NCATS) and the U.S. Food and Drug Administration (FDA), Center for Drug Evaluation and Research (CDER) are hosting a jointly sponsored virtual workshop to […]

Rare Diseases South Africa (RDSA) has a vision to see a South Africa where those impacted by rare diseases and congenital disorders have access to life-saving therapies and support for […]

The Indian Organization for Rare Diseases (IORD) has undertaken several initiatives recently to enhance the public profile of rare diseases in India. On the occasion of Rare Disease Day 2022 […]

Earlier this year, the Chan Zuckerberg Initiative (CZI) launched two Requests for Applications (RFA) for grant opportunities that will fund collaborative teams bringing together patient-led rare disease organizations and research teams for 4-year research projects aimed […]

The 11th European Conference on Rare Diseases and Orphan Products (ECRD) 2022 is being organized by EURORDIS and co-organized by Orphanet, with IRDiRC serving as an associate partner. The ECRD is a patient-led rare disease policy event in which collaborative […]

On February 25th, IRDiRC member Western Australian Department of Health announced the launch of a new Rare Care Centre in Perth, Western Australia, which will provide a holistic model of care for children […]