LEAP 2026: Bringing World-Class Rett Syndrome Education to UK Families

We held our third Reverse Rett LEAP Education Conference on the weekend of June 27th at the Edwardian in Manchester. 

What started as a day of presentations by leading Rett clinicians and scientists has turned into a full weekend. As well as the two days of talks there is what is probably the highlight for most of our families, the dinner and disco on the Saturday night. 

There aren’t many opportunities for families to come together and truly connect in person. To have so many of our children in one room was again, truly special and hopefully all our parents and families came away from Saturday feeling a little less alone. 

LEAP wasn’t the only Rett conference taking place recently. The IRSF ASCEND Conference in Minnesota started the day after LEAP finished. 

Members of Reverse Rett senior leadership team have attended IRSF conferences in the past. In 2022, both Rachael and Andy Stevenson attended the conference in Nashville, where we met the members of both the Taysha Gene Therapies and Neurogene teams for the first time, cementing these important relationships with those and other companies who we work closely with today. 

Seeing the benefit of this kind of quality national conference for families inspired us to come home to the UK and plan the same kind of quality experience for families but with emphasis on the realities of Rett in the UK and resources that are relevant to UK families. 

We spent time talking to families of children, young people and adults of all ages, and exploring the needs of our UK Rett community. We wanted to better understand what resources and expertise we could bring in from right here in the UK and where expertise would need to be brought in from overseas. 

There is so much excellent work happening around the world, and we should absolutely celebrate that. But the reality is that for most UK families, travelling overseas for education and updates simply isn’t practical and some information is not applicable to families living in health and care systems that are quite different from those in the US. 

It has always been part of our mission to provide high quality, evidence based information about Rett syndrome and related disorders to families, clinicians and the wider public.  

We’re proud that over the years, we’ve evolved from producing written resources and online information, to hosting one-day educational events, and now to delivering a full annual weekend conference right here in Manchester. 

LEAP is something we are really privileged to be able to provide for the UK Rett community. We bring together leading UK clinicians alongside international experts and our experts by experience, not only to share the latest developments in research and emerging treatments, but also to home in on how we can help our patients and families live the healthiest lives they can, today. 

Videos of all the presentations at LEAP 2026 will be available on the Reverse Rett YouTube soon.