News

Stakeholder Survey EUHealthSupport

Survey assessing the Member States’ rules on health data in the light of GDPR The European Commission has initiated a study that aims to examine in which manners the processing of personal health date is governed across the EU and how this might affect the cross-border exchange of health data in the EU.The present survey […]

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IRDiRC Newsletter has been just released

May – June 2020 Edition has been released today! This released edition has a flash news style (read 5-7 min) with info on nomination call for a Committee, leadership changes, a new company member, the IRDiRC Orphan Drug Development Guidebook paper, the recently launched IRDiRC official LinkedIn page, and a short summary of the success […]

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IRDiRC Newsletter has been just released

May – June 2020 Edition has been released today! This released edition has a flash news style (read 5-7 min) with info on nomination call for a Committee, leadership changes, a new company member, the IRDiRC Orphan Drug Development Guidebook paper, the recently launched IRDiRC official LinkedIn page, and a short summary of the success […]

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IRDiRC Companies Constituent Committee (CCC): NEW Leadership

June 3, 2020 Dr. Katherine Beaverson has been elected  as new Chair of the IRDiRC Company Constituent Committee (CCC), she is the Patient Advocacy Director for the Rare Disease Research Unit at Pfizer.  The IRDiRC CCC brings together representatives from the for-profit pharmaceutical and biotech that work together to identify common bottlenecks to expedite the execution of rare disease research in the company […]

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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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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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