“Yakup’s Journey to Hope” video in collaboration with EJP RD

Yakup’s Journey to Hope was created in collaboration with EJP RD and GA4GH Driver Project. Follow the story of Yakup as he embarks on a journey to find a diagnosis for his neurogenetic rare disease condition. At GA4GH Plenary 2019, Dr. Sergi Beltran of EJP RD shares how the driver project has helped one patient Read more about “Yakup’s Journey to Hope” video in collaboration with EJP RD[…]

Strategic research agenda for a Public-Private Partnership for Health Innovation under Horizon Europe

Five industry associations representing pharmaceutical, biotech and medical technologies industries operating in Europe (COCIR, EFPIA, MedTech Europe, EuropaBio and Vaccines Europe) have come together to work on a Strategic Agenda for Innovation in Healthcare. This Agenda falls in the framework of the proposed European Health Innovation Public-Private Partnership (PPP) under Horizon Europe. Its objective is to guide future public-private Read more about Strategic research agenda for a Public-Private Partnership for Health Innovation under Horizon Europe[…]

GA4GH 7th Plenary

GA4GH 7th Plenary is happening now, this week, October 21-23! If you’re unable to attend in person, tune in to the Plenary live stream via the GA4GH youtube channel. A video, on a positive patient story where sharing genomic data and international collaborations have been fundamental for the patient and the family, will be launched during Read more about GA4GH 7th Plenary[…]

EURORDIS webinar: “How to use results of data sharing survey”

Take part in an interactive webinar to discuss the results of the first large scale quantitative survey on patients’ preferences in data protection/ sharing and how you can use the results in your advocacy.  This interactive webinar will be led by with Sandra Courbier, Rare Barometer leader and Virginie-Bros Facer, EURORDIS Research Director, the agenda Read more about EURORDIS webinar: “How to use results of data sharing survey”[…]

ERN webinar: “Clinical Features of Ataxia by Dr. Bart van de Warrenburg”

Joint webinar series by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN) on 5 November 2019 at 3 pm CET. The speaker is Dr. Bart van de Warrenburg, a neurologist from the Radboud University Medical Centre in Nijmegen, the Netherlands. He is an Read more about ERN webinar: “Clinical Features of Ataxia by Dr. Bart van de Warrenburg”[…]