Rett Syndrome Association of Ireland CLG

The Rett Syndrome Association of Ireland is a charitable organisation run by parents and families of individuals living with Rett syndrome and related neurodevelopmental disorders. Its core mission is to provide practical support, up-to-date information and a supportive network for families who have received a new diagnosis, while also championing greater awareness among medical professionals and the wider public.

Key activities include organising annual family weekends that bring together children, parents and specialists for shared learning and socialising, and delivering a range of therapeutic resources such as occupational-therapy guidance. The Association also plays an active role in research, administering the HRCI-HRB Joint Funding Scheme 2024, which offers up to €50,000 in financial support for projects that involve patients and the public. Through media appearances, conferences and events such as the Brain Disorder gathering at Slane Castle, the group raises the profile of Rett syndrome and fosters collaboration with researchers.

Serving families across the Republic of Ireland, the Rett Syndrome Association of Ireland combines peer-led support with advocacy and research funding to improve the lives of those affected by this rare condition.