Save the date for the 9th Rare Disease Summer School organized by ITINERARE, a recently established University Research Priority Program of the University of Zurich focusing on “Innovative Therapies in Rare Diseases”. The Summer School will take place at the Kartause Ittingen, Warth (Canton Thurgau) close to Zurich from July 4th to 7th, 2023. The program includes lectures by national and international rare disease experts on topics […]
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The U.S. Food and Drug Administration (FDA) announced a new funding opportunity for the FDA Rare Neurodegenerative Disease Grant Program to support efficient natural history studies and/or biomarker studies that fill unmet needs for rare neurodegenerative diseases for children and adults. Through the support of prospective natural history and/or biomarker studies with high quality and interpretable data elements, FDA […]
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The Interdisciplinary Scientific Committee (ISC) is a multi-stakeholder, multi-disciplinary group of experts in rare diseases medical research with a strong expertise in data sharing, registries, biobanks and natural history studies. ISC has one opening for a new member with experience in rare diseases data sharing, ontologies, natural history, biobanking and registries. Interested candidates are invited […]
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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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ORDI announces the RACEFOR7 2023 program, scheduled this year in 13 Major Cities in India with an expectation of over 20000 participants in the event. More than 10000 people participated in Racefor7 2020, the last physical event. In 2021 and 2022, ORDI organized virtual running events which had over 4000 participants. This year over 20000 participants are expected […]
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IRDiRC launches the Call for Members for the four new Task Forces of the 2023 Roadmap. Check out the newly approved Task Forces: Funding Models to Support the Spectrum of Rare Disease Research and Development The overall objective of this Task Force is to identify how different types of funders make decisions about when to […]
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