Newsletter December 2023

This is the second issue of our newsletter.

In this new issue, you can find out more about :

  • Ambassador and expert model
  • Membership renewal
  • International online donation campaign
  • The NHS and its role in rare diseases
  • Huidagene: a promising CRISPR-CAS13 technology
  • Past and future events
  • Our heroes

P.S. Don't hesitate to send us your comments, testimonials or suggestions. Your voice is important, and we're here to listen and support you every step of the way.

Other published articles

Published videos

Aleix and his parents talk about their life with the syndrome

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