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Orphan Europe Recordati Group

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An integrated platform connecting databases, registries, biobanks and clinical bioinformatics for rare disease research. Visit the platform:

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Orphan Europe Recordati Group

Area of work: Registries
Role: Associated Partner

Contact:

Website

Address: 70 avenue du Général de Gaulle, Puteaux la Defense, 92800, France

Role in RD-Connect:

Orphan Europe is an associated partner with expertise in the setting up and oversight of registries and expert networks. Orphan Europe will be involved in the continual evaluation and oversight of the project implementation to measure progress against indicators and objectives.


Orphan Europe, part of the Recordati group, was founded in 1990 to develop and bring orphan drugs to the market for rare disorders. Orphan Europe has extensive experience around the development of clinical trials for orphan drugs and in specialist regulatory requirements. Our infrastructure has been developed for the novel needs of producing, packaging and distributing very small numbers of specialist products to people around the world.

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Recent news

62,000 samples available via RD-Connect sample catalogue

Published: February 5, 2019

RD-Connect – six years on and outlooks to the future

Published: October 31, 2018

New FAQ section for Sample Catalogue is out!

Published: October 19, 2018

Today is the World MCT8-AHDS Day!

Published: October 8, 2018

Recommendations to create Rare Disease Registries

Published: September 28, 2018

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An integrated platform connecting databases, registries, biobanks and clinical bioinformatics for rare disease research. Visit the platform:

Genome-Phenome Analysis Platform

Analyse and share genomic data

Registry & Biobank Finder

Directory of rare disease biobanks and patient registries

Sample Catalogue

Browse rare disease biosamples stored in biobanks

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  • NEWS
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    • Contact
    • Project partners
    • Partner organisations
  • About
    • Introduction to rare diseases
    • RD-Connect Community
      • About the RD-Connect Community
      • Register as member
      • Structure
    • Funding and collaborations
    • RD-Connect (2012 – 2018)
      • The original EU-funded project
      • Project partners
      • Partner organisations
      • Executive Management Committee (EMC)
      • Scientific Advisory Board (SAB)
      • Patient Advisory Council (PAC)
      • Rare Disease Patient and Ethics Council (RD-PEC)
      • Periodic activity reports
  • What we do
    • Omics data
      • Genome-Phenome Analysis Platform
      • FAQ
      • Data Submission Guide
      • PhenoTips Guide
    • Data linkage
      • FAIRification of rare disease registries
      • Linked data and ontology task force
      • Ontologies in rare disease registries
    • Patient registry data
      • Registry & Biobank Finder for patient registries
      • Registry common data elements
      • Core Implementation Group
    • Biosamples data
      • Registry & Biobank Finder for biobanks
      • Sample Catalogue
      • Biobank assessment process
      • Biobank Assessment Panel
    • Bioinformatic tools
    • Ethical, Legal and Social Issues (ELSI)
      • Sharing of biosamples and data
      • Standards for informed consent
    • Patient engagement
  • Resources
    • Forms and user guides
      • See all forms and guides
      • PhenoTips Guide
      • Data Submission Guide
    • FAQs
      • FAQ: Genome-Phenome Analysis Platform
      • FAQ: Sample Catalogue
    • Newsletters
    • Presentations and flyers
    • Videos
    • Scientific publications
    • Glossary
    • Privacy policy
  • For Patients and Families
  • News
  • Events
  • Contact

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  • Registry & Biobank Finder
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RD-Connect

RD-Connect coordination team

Centro Nacional de Análisis Genómico (CNAG-CRG)
Baldiri Reixac, 4,
Barcelona, 08028
Spain

Email: Sergi Beltran Agulló (Project Lead) or info@rd-connect.eu.

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