An invitation to join the RD-Connect Community, an international Community for rare disease data analysis and data sharing

RD-Connect is an integrated platform connecting databases, registries, biobanks and clinical bioinformatics for rare disease research. It provides user-friendly tools for data analysis and links different data types – omics (e.g. genomics), clinical information, patient registries and biobanks – into a common resource. By enabling scientists and clinicians around the world to analyse and share data and biosamples, RD-Connect speeds up research, diagnosis and therapy development to improve the lives of patients with rare diseases.

RD-Connect has built three integrated online systems open to any rare disease:

• Genome-Phenome Analysis Platform for analysis and sharing of omics data to diagnose patients and discover new disease genes
• Registry & Biobank Finder, a global directory of rare disease patient registries and biobanks
• Sample Catalogue, which helps researchers find rare biosamples stored in biobanks

RD-Connect is open for data submissions from researchers and already holds thousands of secure, pseudonymised datasets. Data are linked at an individual per-patient level. Researchers can analyse data, find similar cases and related information such as availability of biomaterials. In collaborations with other EU projects, RD-Connect has already contributed to the discovery of dozens of novel disease genes.

Join the RD-Connect Community

In July 2018, the new RD-Connect Community was launched. This is an international association of individuals and organizations who would like to participate in shaping the rare disease field, promote data sharing and reuse and advance research. Membership is free of charge and open to organisations, research groups and individuals from diverse backgrounds, engaged in rare disease research anywhere in the world.

Interested in joining? Fill out the registration form to become a member!

For more information about the RD-Connect Community, please visit https://rd-connect.eu/about-rd-connect/become-member/.