Scientific and medical advances in rare diseases continue to accelerate — but equitable access to diagnosis, treatment, and care remains out of reach for millions of people living with a […]
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How can innovative financing approaches improve equitable access to diagnosis, treatment, and care for people living with rare diseases? On behalf of Rare Diseases International, member of IRDiRC Patient Advocates Constituent […]
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Professor Sally Ann Lynch, chair of IRDiRC Diagnostics Scientific Committee (DSC), will be chairing the upcoming ERN ITHACA webinar on “Genetics and unique populations: The Case of the Finnish, Roma […]
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As part of the NIH’s Somatic Cell Genome Editing (SCGE) program, the Office of Strategic Coordination (Common Fund) intends to publish a prize competition announcement to solicit entries for the multi-phase […]
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The next installment of the “Challenges in Pediatric Neuroscience Research Webinar Series”, will be on May 12th, 2023 from 2-3 PM EST. In this episode of our ongoing series, we […]
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The recording of the Science/AAAS webinar on the subject “Knowledge is power: The urgent need to internationalize databases for rare disease patients” will be made available on September 29th at […]
Read MoreThe European Expert Group on Orphan Drug Incentives (OD Expert Group), in collaboration with media partner EURACTIV, is organising a webinar on how to address the unmet needs of rare disease patients by transforming the European Orphan Medicinal Products […]
Read MoreDECIPHER, an IRDiRC-recognised resource and an associated partner of EJP RD, is organising a webinar to introduce DECIPHER, an online data-sharing platform facilitating the visualisation and contextualisation of rare disease genomic and […]
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