Rett Syndrome Europe (RSE) was proud to take part in the 2026 edition of the European Conference on Rare Diseases (ECRD), one of the key gatherings for the rare disease community in Europe.
This year marked a strong presence for Rett syndrome, with two posters presented at the conference, reflecting complementary efforts to improve understanding, care, and outcomes for individuals and families across Europe.
Strengthening data through rettX
One of the highlights was the presentation of rettX, the European Rett syndrome patient registry led by RSE. rettX is a pan-European, patient-led registry designed to collect reliable, family-reported and clinically validated data, transforming it into actionable knowledge that supports research, improves trial readiness, and strengthens advocacy across the continent.
Highlighting unmet needs and fragmented care
Alongside rettX, a second poster focused on consistent unmet needs and fragmented care in Rett syndrome across Europe. Drawing on a multi-country caregiver study, it highlights the ongoing challenges faced by individuals and families — variability in access to specialised care, differences between national healthcare systems, and the need for more coordinated and consistent care pathways.
Collaboration driving progress
RSE would like to thank everyone who contributed to these initiatives — clinical researchers, healthcare professionals, our industry partners, including Acadia, and the wider Rett community. Progress in rare diseases relies on collaboration: bringing together families, clinicians, researchers, and partners to build shared knowledge and common solutions. This is at the heart of RSE’s mission to strengthen the community, support research, and improve care across Europe.
Looking ahead
Participation in ECRD reinforces the importance of continued collaboration and sustained investment in data, research, and care. Initiatives like rettX, combined with research into real-world unmet needs, contribute to a clearer picture of Rett syndrome in Europe — helping ensure that no individual or family remains invisible.
Rett Syndrome Europe remains committed to working with all stakeholders to advance understanding, improve care, and support the community across Europe.
