EJP RD named a 2019 GA4GH Driver Project

Paris, France (February 4, 2019) — The EJP RD will join the Global Alliance for Genomics and Health (GA4GH) as a 2019 Driver Project. This international group of 22 leading genomic data initiatives works collaboratively to develop and pilot GA4GH standards for sharing genomic and health related data.

“The European Joint Programme on Rare Diseases is a major initiative bringing together 130 institutions from 34 European and Associated member states as well as Canada. One of its main goals is to create a centralised FAIR virtual platform of data, resources and tools to overcome fragmentation and accelerate scientific progress and decrease unnecessary hardship and suffering of patients. Working hand in hand with GA4GH is not only in scope of the EJPRD but will accelerate establishment of global data standards and understanding of human diseases.”
Daria Julkowska, EJPRD coordinator, Thematic Institute of Genetics, Genomics & Bioinformatics, INSERM

“Together, the new projects significantly expand GA4GH’s global representation, strengthening our collaborations across Africa and Europe, as well as in Japan, and adding connections in 31 countries for a total global reach across more than 100 countries worldwide,” said GA4GH CEO Peter Goodhand.

“When we launched GA4GH Connect two years ago, I could only have hoped to reach the state we are in now, with global buy-in from some of the world’s most important genomics projects and a true mandate for GA4GH to help get data sharing off the ground in the near term,” said Ewan Birney, Director of EMBL-EBI and Chair of GA4GH.

The other newly added projects are: Human Heredity and Health in Africa (H3Africa), GEnome Medical alliance Japan (GEM Japan), Swiss Personalized Health Network (SPHN), EUCANCan, EpiShare, and Autism Sharing Initiative.

The projects were reviewed by an External Review Committee (Chair: David Altshuler, Vertex Pharmaceuticals; Co-Chairs: Niklas Blomberg, ELIXIR, and Kym Boycott, CHEO) and unanimously approved by the GA4GH Executive Committee. The projects were selected according to three criteria: global representation, scientific merit, and capacity to contribute in-kind resources to GA4GH development efforts.

“Over the past two years, GA4GH has undergone a coming of age,” said Altshuler. “Initially a community of like-minded individuals and organizations committed to federated genomic data sharing, GA4GH is now an indispensable, globally representative standards organization. The new Driver Projects join a community that is building the standards and frameworks that will guide the field for years to come.”

“Several of the new projects are diverse international collaborations to share data and knowledge across national borders,” said Heidi Rehm, an institute member at the Broad Institute of MIT and Harvard and GA4GH a Vice Chair. “Collectively, these global Driver Projects bring together resources from 97 countries around the world.”

“The new collaborations broaden our growing network of National Initiatives engaged with GA4GH, specifically strengthening our connections in Switzerland and Japan through the SPHN and GEM Japan projects,” said Kathryn North, Director of Australian Genomics and a Vice Chair of GA4GH.

Additionally, further to the existing ELIXIR Beacons Driver Project, GA4GH is expanding its collaboration with ELIXIR, the European infrastructure for life science data, which brings together bioinformatics resources in 23 European countries. This new GA4GH and ELIXIR Strategic Partnership will encompass touchpoints between the organizations across all GA4GH Work Streams and also focus on adding capacity in the areas of cloud computing and authorization and authentication infrastructure (AAI).


The European Joint Programme on Rare Diseases is coordinated by INSERM, France and brings over 130 institutions from 34 countries to create a comprehensive, sustainable ecosystem allowing a virtuous circle between research, care and medical innovation. To achieve this goal, the European Joint Programme on RD (EJP RD) has two major objectives: (i) To improve the integration, the efficacy, the production and the social impact of research on RD through the development, demonstration and promotion of Europe/world-wide sharing of research and clinical data, materials, processes, knowledge and know-how; (ii) To implement and further develop an efficient model of financial support for all types of research on RD (fundamental, clinical, epidemiological, social, economic, health service) coupled with accelerated exploitation of research results for benefit of patients. To this end, the EJP RD actions are organized within four major Pillars assisted by the central coordination: (P1): Funding of research; (P2): Coordinated access to data and services; (P3) Capacity building; (P4): Accelerated translation of research projects and improvement outcomes of clinical studies. EJP RD will run for 5 years starting January 1st 2019. Its total cost of 110 million euros is shared between the European Commission brining 55 millions € and participating member states.

The Global Alliance for Genomics and Health (GA4GH) is an international, nonprofit alliance formed in 2013 to accelerate the potential of research and medicine to advance human health. Bringing together 500+ leading organizations working in healthcare, research, patient advocacy, life science, and information technology, the GA4GH community is working together to create frameworks and standards to enable the responsible, voluntary, and secure sharing of genomic and health-related data. All of our work builds upon the Framework for Responsible Sharing of Genomic and Health-Related Data.

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