Newsletter August 2024

Here is the fourth issue of our newsletter.

In this issue, you will learn more about:

  • Role of rehabilitation centers & Inspiring stories
    • Jan’s journey at Adeli (Slovakia)
    • Luzia’s journey in Kokon (Bad Erlach, Austria)
    • Leon’s journey with dolphins (Turkey)
    • Ben’s journey at Kokon (Rohrbach-Berg, Austria)
  • Research highlights
    • Ionis brings MDS community to the next level
    • The importance of advocacy groups in the context of clinical trials
    • Insight into the NHS: How does Charlie contribute to research?
  • Save the Date
  • Summary of past events
  • Happening in the association
    • Tax deductible donation
    • Our sponsors
  • Our sponsors

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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