Category: IRDiRC

IRDiRC Interview Series: Meet Karla Ruiz de Castilla!

IRDiRC is delighted to present you Karla Ruiz de Castilla, PACC member representative of the Iberoamerican Alliance for Rare Diseases (ALIBER). Karla is also the President of ESPERANTRA, a non-profit organization founded with the purpose of contributing to the reduction of mortality from cancer, chronic and rare diseases, with a strong advocacy focus on equal […]

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RD Moonshot: Clinical trials research needs recommendations

The Rare Disease (RD) Moonshot steering group has just published its recommendations for research funders and health research players from the industry and public sector on research needs that can be best addressed by public-private collaborations to optimise clinical trials in small populations.   The RD Moonshot was set up to boost public private collaborations in the […]

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Don’t miss the 12th Chinese Rare Disease Summit on September 8-10

Inaugurated in 2012, China Rare Disease Summit has become the largest and the most comprehensive rare disease conference in China. The annual summit promotes open communications among multiple stakeholders, fosters collaboration, and makes significant contributions to policy advocacy in China. The largest and the most comprehensive rare disease conference in China The most robust platform […]

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New IRDiRC publication

IRDiRC proudly announces the publication of the manuscript “Targeting shared molecular etiologies to accelerate drug development for rare diseases“ online, today. The manuscript is published in the EMBO Molecular Medicine Journal and freely accessible online at the following link: https://www.embopress.org/doi/full/10.15252/emmm.202217159.

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IHI Call Days

The Innovative Health Initiative (IHI) Program Office just pre-published the call for proposals on “Establishing novel approaches to improve clinical trials for rare and ultra-rare diseases”. Check out additional details at the following link: https://www.ihi.europa.eu/sites/default/files/uploads/Documents/Calls/FutureTopics/DraftTopic_TrialsRareDiseases_June2023.pdf Don’t miss out the recording from the information webinar: here. The topics will be formally published at the end of July […]

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IRDiRC announces change in leadership for its Funders Constituent Committee (FCC)

The International Rare Diseases Research Consortium (IRDiRC) announces new leadership changes in its Funders Constituent Committee (FCC). Dr. Adam Hartman (Program Director at the National Institute of Neurological Disorders and Stroke (NINDS), USA), FCC Chair, and Dr. Catherine Nguyen (Director at the Thematic Institute of Genetics, Genomics, and Bioinformatics, INSERM, France), FCC Vice Chair, have […]

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WHO Call for Experts – Technical Advisory Group on Genomics

This call builds on World Health Organization’s enduring efforts in the field of Genomics and follows the publication of the Report “Accelerating access to genomics for global health: promotion, implementation, collaboration, and ethical, legal and social issues” by the WHO Science Council in 2022.  The WHO is now seeking to establish a Technical Advisory Group […]

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IHI Announces Considered Topics for Upcoming Calls for Proposals + Related event (IHI Call Days)

The Innovative Health Initiative (IHI) has revealed the potential topics for inclusion in their upcoming calls for proposals. With the aim of enabling potential applicants to begin preparations, IHI has decided to publish the draft topic texts ahead of the official call launch, scheduled for summer 2023. IHI call 4 (two-stage call) Expanding translational knowledge […]

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Join IRDiRC Therapies Scientific Committee!

The Therapies Scientific Committee (TSC) would like to broaden the committee membership, to represent the worldwide rare disease therapies community in its full width, from early innovation towards regulatory approval and therapeutic support of patients. As such, the TSC has three openings for new members, specifically encouraging participants from the following regions: Africa, Asia, Australasia […]

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NINDS’ Annual Nonprofit Forum

The National Institute of Neurological Disorders and Stroke (NINDS) invites members of nonprofit organizations to an annual Nonprofit Forum. The Progress through Partnership Forum provides an opportunity for nonprofit leaders to network with colleagues and to engage in discussions with NINDS staff. The Forum will take place on July 24-25, 2023. Registration and more information […]

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