Newsletter December 2023

Here is the second issue of our newsletter.

In this issue, you will learn more about:

  • Association’s activities
  • Ambassadors and Experts’ model
  • Membership Renewal
  • Online fundraising campaign
  • Understanding NHS and their ipmact on rare diseases
  • Huidagene: a promising CRISPR-CAS13 technology
  • Past and future events
  • Our heroes

P.S. Don’t hesitate to reach out to us with your feedback, stories, or suggestions. Your voice matters, and we are here to listen and support you every step of the way.

Other published posts

Published Videos

Aleix and his parents talk about life with MECP2 duplication syndrome

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