Global Alliance for Genomics and Health (GA4GH) 13th Plenary
GA4GH 13th Plenary will bring together the global genomics and health community for workshops, presentations, and keynote talks that uncover opportunities to scale genomic and clinical data sharing.
Measuring the Value of Genomics in Healthcare
This virtual workshop will focus on exchanging strategies, tools and experience in measuring the value of genomic testing in healthcare. Demonstrating value is key in informing health technology assessments (HTAs), […]
Pediatric Inclusion Roundtable – Effective Inclusion of Children Early in Clinical Trials
Join Leavitt Partners, LLC, and Friedreich’s Ataxia Research Alliance (FARA) for the Pediatric Inclusion Roundtable: Effective Inclusion of Children Early in Clinical Trials. The program will engage all stakeholders regarding […]
Webinar: Rare Barometer survey on the impact of rare diseases on everyday life
On Wednesday 10 July, Rare Barometer, the global survey initiative of EURORDIS – Rare Diseases Europe, will launch a new survey on the impact of rare diseases on everyday life. The […]
EURO-NMD Gene Therapy Webinar Series – Genetic therapies and therapy developments for rare movement disorders
Willeke van Roon-Mom is a full professor of Human Genetics, in particular of translational studies of neurodegenerative disorders. Her work is highly translational in nature, working in close collaboration with […]
International Conference on Newborn Screening 2024
The 2024 meeting of the International Consortium on Newborn Sequencing (ICoNS) will be held in New York City, USA on October 9 – 10, 2024. ICoNS is the premier event for […]
End-user Training for the EJP RD Virtual Platform
EJP RD – European Joint Programme on Rare Diseases – End-user Training for the EJP RD Virtual Platform This training is intended for potential users of the Virtual Platform (VP) that is […]
Is this okay? Community attitudes on using health data in research in Canada and Australia: A cross-cultural exchange
The access and use of health data for research raises concerns related to privacy, commercial motives, equity and fairness for members of the public who want to know who is […]
RE(ACT) Congress and IRDiRC Conference
The RE(ACT) Congress and IRDiRC Conference 2025, held jointly by the BLACKSWAN Foundation, the International Rare Diseases Research Consortium (IRDiRC) and the European Rare Diseases Research Alliance (ERDERA). From March […]
Accessing Data through DASH: CanPath & HDRN Canada Partnership
Are you a researcher seeking data from Canada’s largest population study – the Canadian Partnership for Tomorrow’s Health (CanPath)? HDRN Canada’s Data Access Support Hub (DASH) offers coordinated services to […]