Community Registry

RDH12 IRD Community Registry

By taking part in the registry, you can help us learn more about our RDH12 community. We can:

  • Find out who we are and where we are to help us support one another
  • Understand how RDH12 affects different people and their families
  • Create opportunities to keep people informed about progress in research and future opportunities to take part in RDH12 studies
  • Share anonymised data that will help researchers better understand the impact of RDH12 on people’s lives.

We treat the data with utmost care. We use it to keep you informed about RDH12 research and community.
We will not sell your information to third parties. We may share your personal information with third parties with your consent to support research into RDH12 by trusted academic and industry partners.
For more information please review our privacy policy.

If you experience any difficulties with the registration process please contact us via the Contact page or directly via [email protected].

The participation is voluntary and will not affect the opportunity to take part in future studies and clinical trials, but the more we know about our RDH12 community the more we can help researchers.

FYI: Throughout the form “you/your” will be referring to the person affected by RDH12. 

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