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ERDERA’s Opening Ceremony Congregates Nearly 600 Participants to Mark the Start of the New Partnership
October 28th, 2024
Nearly 600 people followed ERDERA opening ceremony either online or in person in central Paris on 28 October. We summarise next some highlights from the speakers who took the floor during the event that marked the start of a new era in rare disease research.

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Latest Developments in Good Clinical Practice: Public Consultation on ICH E6(R3) Annex 2 & WHO Human Genome Data Governance
January 30th, 2025
The landscape of clinical research and genomic data governance is evolving rapidly, with two significant developments shaping the future of global health research and regulatory frameworks: the ongoing revision of the ICH E6 (R3) Good Clinical Practice (GCP) guideline and the recent release of WHO guidance on the ethical collection, access, use, and sharing of human genome data.

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The Online Submission Platform for ERDERA’s Joint Transnational Call 2025 is Now Live
January 21st, 2025
We are pleased to announce that the platform for submitting project applications for the Joint Transnational Call for Proposals (JTC) 2025 is now officially live. This highly anticipated call invites research teams across Europe and internationally to collaborate on cutting-edge projects aimed at “Pre-clinical therapy studies for rare diseases using small molecules and biologicals – development and validation.”

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A New Era in Rare Disease Diagnosis: How Big Data and Pan-European Collaboration are Changing Lives
January 20th, 2025
For decades, rare disease patients and their families have endured a painful “diagnostic odyssey,” bouncing between specialists and often going years without answers. Rare diseases, by definition, affect fewer than 5 in 10,000 people in the European Union, but with over 7,000 such conditions cataloged, their collective impact is profound. A staggering 70% of these diseases are genetic, yet pinpointing the precise DNA mutation responsible has often been a Herculean task. Now, thanks to an unprecedented pan-European collaboration and advances in big data analysis, hope is on the horizon for those with previously unsolved rare diseases.

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Slovenia Joins ERDERA’s Joint Transnational Call for Proposals on Rare Disease Therapies
January 16th, 2025
We are delighted to announce that the Ministry of Health of the Republic of Slovenia (Ministrstvo za zdravje) has officially joined the funding organisations participating in the first Joint Transnational Call for Proposals on Rare Disease Therapies. This initiative is part of ERDERA’s ongoing commitment to advancing cutting-edge research in this critical area.

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Join ERDERA’s Extended Webinar on the Joint Transnational Call on 14 January
January 8th, 2025
Following the success of our previous session, ERDERA warmly invites researchers, patient advocates, and early-career professionals to an extended webinar on 14 January 2025. This webinar is part of the 2025 Joint Transnational Call for Proposals, “Pre-clinical therapy studies for rare diseases using small molecules and biologicals – development and validation”, which was officially launched on 10 December 2024.

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Latest Developments in Good Clinical Practice: Public Consultation on ICH E6(R3) Annex 2 & WHO Human Genome Data Governance

Freya2025-01-30T18:14:19+02:00January 30th, 2025|

The landscape of clinical research and genomic data governance is evolving rapidly, with two significant developments shaping the future of global health research and regulatory frameworks: the ongoing revision of the ICH E6 (R3) Good Clinical Practice (GCP) guideline and the recent release of WHO guidance on the ethical collection, access, use, and sharing of READ MORE

The Online Submission Platform for ERDERA’s Joint Transnational Call 2025 is Now Live

Freya2025-01-21T17:09:24+02:00January 21st, 2025|

We are pleased to announce that the platform for submitting project applications for the Joint Transnational Call for Proposals (JTC) 2025 is now officially live. This highly anticipated call invites research teams across Europe and internationally to collaborate on cutting-edge projects aimed at “Pre-clinical therapy studies for rare diseases using small molecules and biologicals – READ MORE

A New Era in Rare Disease Diagnosis: How Big Data and Pan-European Collaboration are Changing Lives

Freya2025-01-20T15:25:44+02:00January 20th, 2025|

For decades, rare disease patients and their families have endured a painful “diagnostic odyssey,” bouncing between specialists and often going years without answers. Rare diseases, by definition, affect fewer than 5 in 10,000 people in the European Union, but with over 7,000 such conditions cataloged, their collective impact is profound. A staggering 70% of these READ MORE

Slovenia Joins ERDERA’s Joint Transnational Call for Proposals on Rare Disease Therapies

Freya2025-01-16T16:10:30+02:00January 16th, 2025|

We are delighted to announce that the Ministry of Health of the Republic of Slovenia (Ministrstvo za zdravje) has officially joined the funding organisations participating in the first Joint Transnational Call for Proposals on Rare Disease Therapies. This initiative is part of ERDERA’s ongoing commitment to advancing cutting-edge research in this critical area. READ MORE

Join ERDERA’s Extended Webinar on the Joint Transnational Call on 14 January

Freya2025-01-13T11:44:46+02:00January 8th, 2025|

Following the success of our previous session, ERDERA warmly invites researchers, patient advocates, and early-career professionals to an extended webinar on 14 January 2025. This webinar is part of the 2025 Joint Transnational Call for Proposals, “Pre-clinical therapy studies for rare diseases using small molecules and biologicals – development and validation”, which was officially launched on READ MORE

ERDERA Launches the 2025 Joint Transnational Call for Proposals on Rare Disease Therapies

Freya2024-12-10T14:54:07+02:00December 10th, 2024|

The European Rare Diseases Research Alliance (ERDERA) is delighted to announce the official launch of its 2025 Joint Transnational Call (JTC) for Proposals as of today, 10 December 2024. This eagerly anticipated call invites research teams across Europe and internationally to collaborate on cutting-edge projects aimed at “Pre-clinical therapy studies for rare diseases using small READ MORE

Join the 2025 Joint Transnational Call Webinar on 17 December

Freya2024-12-07T09:15:23+02:00November 29th, 2024|

The European Rare Diseases Research Alliance (ERDERA) is delighted to invite researchers, patient advocates, and early career professionals to a key webinar on 17 December 2024, following the official launch of the 2025 Joint Transnational Call for Proposals for “Pre-clinical therapy studies for rare diseases using small molecules and biologicals – development and validation” on READ MORE

Looking Forward to the 8th RE(ACT) Congress and IRDiRC Conference 2025

Freya2024-12-07T09:14:53+02:00November 25th, 2024|

From 5–7 March 2025, the global rare disease community will convene for a landmark event: the 8th RE(ACT) Congress & IRDiRC Conference. Taking place in Brussels, this gathering is jointly organised by the BLACKSWAN Foundation and the International Rare Diseases Research Consortium (IRDiRC). READ MORE