Community Connections
IRSF is here to help you find connections and support every step of the way. Find local organizations, explore online groups, and hear stories from families who share your journey.
Register with IRSF
Join our community to stay informed and connected. By registering with IRSF, you’ll regularly receive valuable resources, updates, and opportunities to engage with families and experts who understand Rett syndrome. Together, we can meet the demands of life with Rett—today and tomorrow.
Follow Us
Facebook Groups and Support Forums
Connect with families who understand what you’re going through. Join one of our Facebook groups for diagnosed parents, dads, or grandparents, or explore other forums to connect and share experiences.
Parents of Newly Diagnosed Children (PONDS) Groups
Moderated by members of the Family Empowerment team and parent volunteers, these groups are a welcoming space for parents navigating the early days after a Rett diagnosis and beyond.
IRSF Managed Social Networks
These groups offer dedicated spaces for dads and grandparents to connect, share experiences, and support each other in their unique roles in caring for a loved one with Rett syndrome.
Other Support Forums
These independent forums are not managed or moderated by IRSF, but many families have found them to be valuable spaces for connection and support.
Explore Events
Discover opportunities to learn, connect, and support the Rett community. From educational sessions to fundraisers, our events empower families every step of the way.
Rett Syndrome Associations
Rett syndrome organizations across the U.S. offer local support and resources.
International Rett Resources
Rett syndrome care and resources can vary greatly from one country to another. These international organizations offer region-specific support, resources, and connections to help families navigate life with Rett in their part of the world.
Canada
Latin America
Fundación SinRett
Argentina
Associação Brasileira de Sindrome de Rett (ABRE-TE)
Brazil
Fundación Caminamos Por Ellas y Ellos Síndrome de RETT Chile
Chile
Somos Rett Colombia
Colombia
Fundación Rett
Ecuador
Asociación Rettos de Amor México
Mexico
Sindrome Rett Uruguay
Uruguay
Western Europe
Rett Syndrome Europe
Europe
Österreichische Rett-Syndrom Gesellschaft (ORSG)
Austria
Belgische Rett Syndroom Vereniging (BRSV)
Belgium
Landsforeningen Rett-syndrom
Denmark
Rett Finland
Finland
Association Française du Syndrome de Rett
France
Rett Deutschland e.V.
Germany
ΕΝΩΣΗ ΓΟΝΕΩΝ ΚΑΙ ΦΙΛΩΝ ΑΤΟΜΩΝ ΜΕ ΣΥΝΔΡΟΜΟ ΡΕΤ
Greece
Rett Syndrome Rannsóknarsjóður Guðrúnar
Iceland
Rett Syndrome Association of Ireland
Ireland
Associazione Italiana Rett (AIRETT)
Italy
Nederlandse Rett Syndroom Vereniging (NRSV)
Netherlands
Norsk Forening for Rett Syndrom
Norway
Associação Nacional de Pais e Amigos Rett (ANPAR)
Portugal
La Asociación Española de Síndrome de Rett (AESR)
Spain
Asociación catalana de Síndrome de RETT
Spain - Catalan
Nationellt Center för Rett syndrom och närliggande diagnoser
Sweden
Rett Verein Schweiz
Switzerland
Rett UK
United Kingdom
Reverse Rett UK
United Kingdom
Eastern Europe
Spolek rodičů a přátel dívek s Rettovým syndromem
Czech Republic
Magyar Rett Szindróma Alapítvány
Hungary
Agotos labdaros ir paramos fondas
Lithuania
Ogólnopolskie Stowarzyszenie Pomocy Osobom z Zespołem Retta (OSPOzZR)
Poland
Rett Sendromlu Aileler Yardımlaşma ve Dayanışma Derneği
Turkey
Be a champion for Rett syndrome.
Make a difference in the lives of those affected by Rett syndrome. Explore ways to get involved and support families, research, and advocacy efforts.