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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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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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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On 15 December 2022, Orphadata Science was awarded Global Core Biodata Resource status, being one of the first batch of resource to be designated by the Global Biodata Coalition. Orphadata Science (which includes Orphanet‘s scientific knowledge base) was one of the 12 European resources to have been selected following a two-step application process evaluated by […]
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AFM Téléthon (France) launches a scientific call for proposals for 2023, open both to French and foreign teams. The aim is to support: Fundamental Research and Physiopathology of Diseases of the Neuromuscular System Development of Innovative Therapeutic Approaches for Rare Genetic Diseases More information available here (PDF) Along with this call, AFM Téléthon also launches […]
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Join us on 8th December for the European Health Summit that will take place in Brussels (Belgium) and online to find out more about our journey towards a Rare Disease Moonshot. Online registration is open here: https://lnkd.in/eCGr3ZmX IRDiRC Scientific Secretariat Coordinator, Daria Julkowska, will be part of the panel “Building a sustainable R&D ecosystem for […]
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IRDiRC member organization Fondazione Telethon is delighted to share the press release of their participation in the European AGORA (Access to Gene therapies fOr RAre disease) Consortium. The AGORA Consortium was founded on September, 23rd 2022 with a focus on fostering alternative solutions to make life-saving gene therapies available for children born with rare genetic diseases. According […]
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