Research
Advancing Rett syndrome research across Europe.
RSE works alongside European clinicians, researchers and member associations to accelerate the science that improves outcomes for people with Rett syndrome and their families.
Scientific Advisory Board
Guided by leading European experts
RSE’s Scientific Advisory Board brings together leading European clinicians and researchers — paediatricians, neurologists, geneticists, therapists and care specialists — who help shape our scientific priorities.
They review evidence, contribute to international guidelines on Rett syndrome care, and help RSE focus its work where it can have the greatest impact for families.
Research news
Latest from the lab.
Findings, conference reports and partner updates from our research community across Europe.
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Taysha Reports Progress on TSHA-102 Gene Therapy for Rett Syndrome
Taysha Gene Therapies has shared positive longer-term interim data from its investigational gene therapy TSHA-102, with dosing now complete in the pivotal study and regulatory discussions planned for 2027.
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Consistent Unmet Needs and Fragmented Care in Rett Syndrome Across Europe
A multi-country caregiver study presented by Rett Syndrome Europe at ECRD 2026 reveals consistent unmet needs and fragmented care across Europe.
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rettX: Building a Patient-Led Rett Syndrome Registry for Europe
rettX is the pan-European, patient-led Rett syndrome registry led by Rett Syndrome Europe, presented at ECRD 2026. Learn what it is and how families can take part.
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Taysha share more information on Part A and Part B of their gene therapy trial
More details on the changes seen so far in the first cohort of individuals who received either the high or low dose, ages 6-21 years. No serious adverse events seen at either dose. Read the full response below.
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Latest Update From Taysha
We are delighted to share the very positive update from Taysha on their gene therapy programme for Rett syndrome. Ten participants have now received the therapy which has generally been well tolerated with no serious adverse side effects. They are in discussion with the FDA about moving to the next phase which is dosing more…
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Acadia confirm submission to the EMA for approval of trofinetide (known as Daybue in US and Canada).
You can read the full press release here . They expect it will be 10-14 months before a decision is known. You might also like to read this plain language summary Trofinetide Treatment Demonstrates a Benefit Over Placebo for the Ability to Communicate in Rett Syndrome.