In 2024, the MECP2 Duplication Syndrome community has witnessed remarkable milestones in the race for a cure with the launch of not one, but two clinical trials. In addition to these important developments, we are proud of the progress we’ve made toward supporting families. As key examples of our efforts in 2024, we would particularly like to highlight:
- The development of REMEDS, our online registry-survey platform for MECP2 Duplication Syndrome based in Europe. This vital resource has been the focus of intensive work throughout 2024 and is set to launch in mid-2025, paving the way for better data collection and understanding of the syndrome.
- The production of two webinars and an e-book to help families gain a deeper understanding of the ATTUNE study and its implications.
- Numerous charity events in Austria aimed at raising awareness of MECP2 Duplication Syndrome.
- The approval from the Austrian Ministry of Finance, allowing donations made to us from January 1, 2024, to be ultimately tax-deductible.
2024 was a very exciting year for our community and our organization. However, we recognize that our journey is far from over…
Your support since our establishment in the summer of 2022 has been truly incredible and gives us the confidence to continue. Thanks to you, we continue to advocate, fund research, and provide support to families navigating life with MECP2 duplication syndrome.
As we look ahead to 2025, we are committed to:
- Bridging academic research and pharmaceutical companies to accelerate therapeutic development and improve diagnostic tools.
- Advancing the implementation of meaningful clinical trials, for example, by collaborating with pharmaceutical companies and health authorities such as the FDA or EMA.
- Providing financial support to families to help them access essential medical devices and therapies tailored to their unique needs.
Our work wouldn’t be possible without your continued support. Thank you for being part of our journey.
