Category: IRDiRC

IRDiRC Companies Constituent Committee (CCC): NEW Member

June 3, 2020 IRDiRC welcomes Illumina Inc. as new member to its Company Constituent Committee, which  brings together representatives from the for-profit pharmaceutical and biotech members of IRDiRC. Illumina is a global leader in genomics and strives to enable clinical laboratories worldwide the ability to offer best-in-class solutions needed to achieve a timely diagnosis and […]

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FDA In Brief: FDA Requests Input on Rare Disease Clinical Trial Networks

June 2, 2020 The U.S. Food and Drug Administration (FDA) announced a Request for Information and Comment on Rare Disease Clinical Trial Networks. In particular, the FDA is requesting public input on practical steps and successful approaches relating to the start-up, implementation and sustainment of global clinical trials networks, including specific considerations for establishing such networks […]

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IRDiRC at the ECRD

IRDiRC has been actively involved in the ECRD online conference that will take place this week: May 14 – 15, 2020.In particular, IRDiRC members joined several events planned during this 2-days event. On Thursday 14th, Dr. Durhane Wong‐Rieger was one of the speakers of the “Getting our rights ‘right’: An international framework for rare diseases” […]

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IRDiRC Funders Committee: New Leadership

IRDiRC is delighted to announce the new leadership on the Funders Constituent Committee (FCC), Dr Adam Hartman, NIH, as Chair and Dr Catherine Nguyen, INSERM, as Vice-Chair.  Dr Hartman and Dr Nguyen will be in charge for the next three years. The Committee mission is to facilitate high-level coordination of funding initiatives to maximize the impact […]

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New IRDiRC Publication

A new IRDiRC publication is out! The Boosting delivery of rare disease therapies: the IRDiRC Orphan Drug Development Guidebook has been just published by Nature Reviews – Drug Discovery. The paper has been authored by the IRDiRC Task Force “Orphan Drug Development Guidebook (ODDG)”. This IRDiRC Guidebook is aimed at facilitating drug development for rare […]

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Webinar. Rare disease community response to COVID-19: Patient group and industry perspectives​

WORLD ORPHAN DRUG CONGRESS USA WEBINARS organizes this event scheduled on Wednesday April 22, 12 – 1pm EDT. There are many unprecedented challenges facing the rare disease community due to COVID-19 — maintaining patient access to rare disease therapies, managing delays in clinical trials, and ensuring patient support are all top of mind.  Join this webinar […]

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Dr Lucia Monaco interview on Rare Diseases

The Chair  of the Consortium Assembly, Dr Lucia Monaco, has been recently interviewed by Raconteur for its Rare Diseases Report published by The Times – The Sunday Times- on its July edition.  Dr Monaco interview was one of the nine articles chosen for this focus and she  well highlighted the relevance of “the fight for equal access […]

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Task Force Opening: Clinical Research Networks for Rare Diseases

The Interdisciplinary Scientific Committee (ISC) is establishing a Task Force on Clinical Research Networks for Rare Diseases aiming to map and analyse the existing ecosystem of national/supranational clinical research networks, and develop policy recommendations on guiding principles for an international framework of collaboration of these networks. The ISC is looking for members to populate this […]

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