At the 2026 European Conference on Rare Diseases (ECRD), Rett Syndrome Europe presented a poster on the consistent unmet needs and fragmented care experienced by people with Rett syndrome and their families across Europe — drawing on insights from a multi-country caregiver study.
Listening to families across countries
The study gathered the experiences of caregivers in several European countries, building a shared picture of how care is delivered — and where it falls short. Listening directly to families is essential: their day-to-day reality reveals gaps that statistics alone can miss.
Where care falls short
- Variability in access to specialised care and services
- Differences in healthcare systems between countries
- The need for more coordinated and consistent care pathways
Why it matters
Understanding these gaps is essential for improving policies, services, and support systems at both national and European levels. By documenting where care is inconsistent, RSE and its partners can advocate more effectively for the coordinated, equitable support that every family deserves — wherever they live in Europe.
This research was presented at ECRD 2026 alongside rettX, the European Rett syndrome registry. Read our ECRD 2026 overview for the full picture of RSE’s presence at the conference.
