RD-ConnectRD-Connect

  • About
    • Introduction to rare diseases
    • Structure
      • Executive Management Committee (EMC)
      • Scientific Advisory Board (SAB)
      • Patient Advisory Council (PAC)
      • Rare Disease Patient and Ethics Council (RD-PEC)
      • Panel for Biobank Assessment
    • Collaborations
  • What we do
    • Data linkage
      • FAIRification of rare disease registries
      • Linked data and ontology task force
      • Ontologies in rare disease registries
    • Omics data
      • Genome-Phenome Analysis Platform
    • Phenotypic 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
      • Response to the EU General Data Protection Regulation (GDPR)
    • Patient engagement
  • Resources
    • Newsletters
    • Scientific publications
    • Forms and guides
    • Presentations and flyers
    • Periodic activity reports
    • Glossary
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  • News
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  • Contact
    • Coordination office
    • Contacts Directory
    • Organisations Directory
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  • Rainald von Gizycki
 

Rainald von Gizycki

RD-Connect

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Rainald von Gizycki

Position: Honorary President
Organisation: PRO RETINA Deutschland e.V.
Area of work: Patient engagement

Member of: Patient Advisory Council (PAC)

Contact information:

Email

Website

Address: Vaalser Str. 108 , Aachen, 52074, Germany

Role in RD-Connect:

Rainald is a member of the RD-Connect Patient Advisory Council (PAC).

Background:

Rainald worked for several years as a project leader and researcher in Technology Management and Assessment at various research institutes before moving in the areas of rehabilitation research patient empowerment in retinal and rare diseases at Charité clinics in Berlin. He is the founder, former chairman and currently honorary president of the German organisation, PRO RETINA and also serves on the board of Pro Retina Foundation Fighting Blindness. Rainald has been the coordinator of Retina Europe.

Visit the platform

Go to Genome-Phenome Analysis Platform

Go to Registry & Biobank Finder

Go to Sample Catalogue

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Recent news

RD-Connect Genome-Phenome Analysis Platform is an IRDiRC Recommended Resource

Published: April 5, 2018

RD-Connect in press

Published: March 1, 2018

Today is the Rare Disease Day 2018

Published: February 28, 2018

Key RD-Connect, NeurOmics and EURenOmics publication

Published: February 27, 2018

RD-Connect and EURenOmics among the DG Research success stories

Published: February 15, 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
  • EVENTS
  • CONTACT
    • Coordination office
    • Contacts Directory
    • Organisations Directory
  • About
    • Introduction to rare diseases
    • Structure
      • Executive Management Committee (EMC)
      • Scientific Advisory Board (SAB)
      • Patient Advisory Council (PAC)
      • Rare Disease Patient and Ethics Council (RD-PEC)
      • Panel for Biobank Assessment
    • Collaborations
  • What we do
    • Data linkage
      • FAIRification of rare disease registries
      • Linked data and ontology task force
      • Ontologies in rare disease registries
    • Omics data
      • Genome-Phenome Analysis Platform
    • Phenotypic 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
      • Response to the EU General Data Protection Regulation (GDPR)
    • Patient engagement
  • Resources
    • Newsletters
    • Scientific publications
    • Forms and guides
    • Presentations and flyers
    • Periodic activity reports
    • Glossary
  • For Patients and Families
  • News
  • Events
  • Contact
    • Coordination office
    • Contacts Directory
    • Organisations Directory

Quick links

  • Genome-Phenome Analysis Platform
  • Registry & Biobank Finder
  • Sample Catalogue

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RD-Connect

RD-Connect coordination team
Institute of Genetic Medicine
University of Newcastle upon Tyne
International Centre for Life
Newcastle upon Tyne
NE1 3BZ
United Kingdom

Email: Libby Wood (Project Manager)

T: +44 191 241 8621
F: +44 191 241 8770

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