News

IRDiRC Interview Series: Stefano Benvenuti

In the context of the IRDiRC Interview Series, Funders Constituent Committee member and Fondazione Telethon’s Head of Affairs Stefano Benvenuti’s interview is now available. “IRDiRC is a great opportunity for knowing more and doing your job better” says Stefano Benvenuti. Watch the full interview here

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Grant Funding Opportunity for Rare Diseases Research – Clinical Studies of Orphan Products Addressing Unmet Needs of Rare Diseases

The Food and Drug Administration’s (FDA) Office of Orphan Products Development (OOPD) is pleased to announce availability of funds to support clinical trials for rare diseases and conditions. The purpose of this funding opportunity announcement is to fund clinical trials of products evaluating efficacy and/or safety in support of a new indication or change in […]

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Science/AAAS Webinar: “Knowledge is power: The urgent need to internationalize databases for rare disease patients”

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 12:00 PM EST. The webinar is expected to last approximately 60 minutes, during which a board of global experts (among which Lucia Monaco, former IRDiRC […]

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Fondazione Telethon participates in European AGORA Consortium

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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IRDiRC Announces Creation of Regulatory Scientific Committee to Tackle Regulatory Challenges in Rare Diseases Research – Press Release

22 September 2022 – Paris, France – IRDiRC, a global collaborative initiative with the vision to enable all people living with a rare disease to receive an accurate diagnosis, care, and available therapy within one year of coming to medical attention, today announced the formation of the Regulatory Science Committee (RSC). “IRDiRC recognizes that the fast-moving pace […]

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Global Genes Patient Advocacy Summit to be held soon

Global Genes is delighted to announce that they will soon be hosting their largest event of the year, the Patient Advocacy Summit. The 3-day event will take place from September 12th to September 14th in San Diego, California (USA). Join patients, caregivers, advocates, healthcare professionals, researchers, partners, and allies of the rare diseases community; hear […]

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Nominations open for the EURORDIS Black Pearl Awards 2023

EURORDIS is pleased to announce that nominations for the EURORDIS Black Pearl Awards are now open until September, 4th. The Awards are presented to patient advocates and organisations, policy makers, scientists, companies, and media in recognition of their exceptional achievements and outstanding commitment to the rare disease cause. NOMINATIONS: Just like every year, nominations can be submitted for any individual, organisation or company (including yourself and/or […]

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