Become a member of the RD-Connect Community

RD-Connect, the European rare disease infrastructure project initiated by Hanns Lochmüller in 2012, has launched a new initiative to take it forward as a permanent resource beyond the initial EU funding period. The new RD-Connect Community is an independent, not-for-profit, international association of individuals and organizations sharing the vision of building an open community that works to improve rare disease research. By bringing together clinicians, academics, geneticists, bioinformaticians, ethicists, patient advocates and policy makers, the Community combines various approaches to support rare disease research. The Community’s mission is promote, facilitate and accelerate rare disease research by maximizing the availability and (re)use of rare disease data and biosamples through provision of infrastructure, tools and services to share, analyse and link datasets and biosamples in a secure and regulated way.

The Community is led by Ivo Gut from Centro Nacional de Análisis Genómico in Barcelona, Spain, who is the current scientific coordinator of RD-Connect. The previous RD-Connect coordinator, Hanns Lochmüller, remains involved in the Community as the past chair. The Community’s Executive Committee now includes members from BBMRI-ERIC and ELIXIR as well as an additional patient representative in addition to representation from EURORDIS, the European Organisation for Rare Diseases.

Membership is free of charge and open to organisations, research groups and individuals engaged in rare disease research anywhere in the world and from diverse backgrounds. Members contribute to the Community in many ways, e.g. by sharing data and biosamples through the RD-Connect infrastructure, promoting the Community as well as the values of collaboration, multidisciplinarity and reciprocity, suggesting and participating in relevant grant opportunities and participating in Community’s decision-making.

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