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 explore Regulatory Fitness in Rare Disease Clinical Trials. The virtual workshop will take place over two days on May 16th – 17th. Academic investigators, patient groups, and small or emerging pharmaceutical and biotechnology […]
Read MoreRare 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 an improved quality of life. One of the actions which will allow that is a validated patient registry that is confidential and secure and that […]
Read MoreRare 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 an improved quality of life. One of the actions which will allow that is a validated patient registry that is confidential and secure and that […]
Read MoreThe 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 (February 28th), a press conference was called at the State Information & Public Relations Department in Hyderabad, India as a collaborative effort between IORD and […]
Read MoreThe 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 (February 28th), a press conference was called at the State Information & Public Relations Department in Hyderabad, India as a collaborative effort between IORD and […]
Read MoreEarlier this year, the
Read MoreEarlier 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 at advancing our understanding of the fundamental science of rare diseases. The Networking Expo is a two-day ideation and matchmaking workshop specifically designed as an opportunity for researchers and […]
Read MoreThe 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 dialogue, learning and conversation takes place, forming the groundwork to shape goal-driven rare disease policies. The fully online conference will take place on June 27th
Read MoreThe 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 dialogue, learning and conversation takes place, forming the groundwork to shape goal-driven rare disease policies. The fully online conference will take place on June 27th – July 1st from 14.00 – 18.00 CET. Poster abstracts […]
Read MoreOn 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 with rare and undiagnosed diseases. Based at Perth Children
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