RD-CONNECT
An integrated platform connecting databases, registries, biobanks and clinical bioinformatics for rare disease research
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About RD-Connect
About RD-Connect
An introduction from the coordinator
Objectives
Partners
About IRDiRC
About -omics
Glossary of Terms – Definitions
Collaborating & Contributing Projects
Publications and outreach
Scientific publications
News
Newsletters
Posters
RD-Connect on Twitter
Governance
Governing Board
Executive Management Committee
Scientific Advisory Board
Rare Disease Patient and Ethics Council (RD-PEC)
Patient Advisory Council (PAC)
Global platform
Global platform for data exchange
Contribute your data
Current developments
Ethics, legal and social issues
Sharing bio-specimens and data
Standards for informed consent
Rare Disease Patient and Ethics Council (RD-PEC)
Patient Advisory Council (PAC)
Using biological materials in research: response to Council of Europe’s recommendations
Databases and patient registries
ID-Cards: linking up rare disease research across the world
Publishing rare disease registries in the RD-Connect Catalogue
Ontologies in rare disease registries
Human Phenotype Ontology (HPO) and related tools for rare disease
Orphanet Rare Disease Ontology (ORDO)
Orphanet Knowledge Base
Linked data and ontology task force
Registry Common Data Elements
Core Implementation Group
Biobanks
ID-Cards: linking up rare disease research across the world
Publishing rare disease sample collections on the RD-Connect Catalogue
Minimum criteria for a RD-Connect biobank
RD-Connect Panel for Biobank Assessment
Bioinformatics tools
List of tools and resources
Contact us
Contact us
All contacts
Contacts directory
Organizations directory
Events
Events listing
Calendar
Past events: reports and presentations
Linked data training workshop (BYOD)
Heidelberg annual meeting: training presentations
Barcelona annual meeting: training presentations
ECRD 2016
Berlin annual meeting 2017
News
All news items
For Patients & Families
Interviews
Interview with Christophe Beroud, the leader of RD-Connect work on clinical bioinformatics
Developing a European Reference Network from the perspective of a European Patient Advocacy Group representative
Visual awareness in rare diseases
Crash Course in Patient-Researcher Communication
Reactions to the Report from the EMA Workshop on Patients Registries
Glossary
Talking Heads
Explore the platform
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