RD-Connect

RD-Connect (2)

RD-Connect videos

RD-Connect Friday, 01 March 2019 10:34

Videos

Watch the RD-Connect video tutorials, testimonies and webinars. All videos are available on the RD-Connect YouTube Channel.
 

RD-Connect website

 

GENOME-PHENOME ANALYSIS PLATFORM - TUTORIALS

Analysing autosomal recessive variants Uploading phenotypic data in PhenoTips Filtering variants using OMIM and ORDO terms
Tagging variants Searching across the whole database

 

BIOBANKS AND PATIENT REGISTRIES

Registry & Biobank Finder - adding your registry/biobank Registry & Biobank Finder - searching for registries/biobanks Sample Catalogue webinar for biobank managers

 

Recommendations to create Rare Disease Registries

 

PATIENTS AND ETHICAL AND LEGAL ISSUES

What is RD-Connect? - EURORDIS webinar General Data Protection Regulation - EURORDIS webinar Patient perspective on data sharing in rare disease research

 

WEBINARS FOR THE EUROPEAN REFERENCE NETWORKS

Genome-Phenome Analysis Platform Registry & Biobank Finder and Sample Catalogue Linking up all those data - why should we make data FAIR?

RD-Connect Community

RD-Connect Friday, 01 March 2019 10:32

WHAT IS THE RD-CONNECT COMMUNITY?

The RD-Connect Community is an independent, non-governmental, not-for-profit, international association of individuals and organizations sharing the vision of building an open community that works to improve rare disease research. The Community’s mission is to 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. By promoting data sharing and analysis tools and the data sharing ethos among rare disease researchers and clinicians and by raising awareness among patient communities and policy makers, the community aims to maximise the impact of the tools and services developed by RD-Connect members.

 

See Official ERNs Brochure

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