As Rare Disease Day 2023 is approaching, the Chinese Organization for Rare Disorders invites you to attend the Global Workshop on Access to Rare Disease Diagnosis and Treatment, on 28th February 2023, at 19:00-22:30 Beijing time. Founded in 2013 by Kevin HUANG, the Chinese Organization for Rare Disorders (CORD) functions as a platform, hub and advocacy NGO […]
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Don’t miss the Rare Diseases Twitter Chat hosted by NCATS today, February 22, from 1 to 3 p.m. EST. Joni Rutter, PJ Brooks and other experts will answer questions from the community on key topics in the rare diseases space. Follow NCATS’ Twitter account and use #RareDiseasesChat to ask your questions before or during the […]
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Rare Disease International (RDI) has opened the event platform for #SeeRare – the global Rare Disease Day event organized in partnership with the international Rare Disease Day campaign. BE PART OF THE GLOBAL EVENTTo be part of the event, please share a 30-second video introducing your organization and why Rare Disease Day is important to […]
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Don’t miss the Rare Disease Day organized by FDA, a virtual public meeting, on February 27th, 2023, 9:00 am – 4:45 pm ET, in global observance of Rare Disease Week. This year’s theme is “Intersections with Rare Diseases – A patient focused event.” Participants will have the unique opportunity to: Hear directly from the FDA […]
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The Europe Rare Disease Summit 2023 is just around the corner, this year will be hosted by Bamberg Health in Madrid (Spain) next Wednesday, February 15th, and will bring together local and European government authorities, members of the European Commission and the European Parliament, large public and private hospital groups, research centers, pharmaceutical and patient […]
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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
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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 […]
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The registration for the Third International Summit on Human Genome Editing is now open. The event will take place on 6-8 March 2023 at the Francis Crick Institute, London UK. Register for free here The Third International Summit on Human Genome Editing will take place on 6-8 March 2023 at the Francis Crick Institute, London […]
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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 […]
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IRDiRC is glad to partner with Alexion’s annual Rare Conversations conference, “Rare Disease Policies: Pioneering the way towards a resilient ecosystem”, that we will partner. The event will reflect on several aspects that may be included in the new legislative framework, trying to answer the question: How to create a resilient rare disease ecosystem for the […]
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