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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.

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Rett Community

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.

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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.

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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.

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Connect with Us

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 Community

Rett Syndrome Associations

Rett syndrome organizations across the U.S. offer local support and resources.

Rett Syndrome Angels

Northeast (MA, CT, RI, VT, ME, NH)

Northwest Rett Syndrome Association (NWRSA)

Pacific Northwest (AK, ID, OR, WA)

New Jersey Rett Syndrome Association (NJRSA)

New Jersey

Midwest Rett Syndrome Foundation (MRSF)

Midwest (IL, IA, MN, ND, SD, WI)

Rocky Mountain Rett Association (RMRA)

Colorado

Rett Community

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.

Rett Syndrome Association of Australia (RSAA)

Australia

China Rett Syndrome Association

China

Indian Rett Syndrome Foundation

India

Japan Rett Syndrome Association

Japan

Rett New Zealand

New Zealand

Taiwan Rett Syndrome Association

Taiwan

Österreichische Rett-Syndrom Gesellschaft (ORSG)

Austria

Belgische Rett Syndroom Vereniging (BRSV)

Belgium

Spolek rodičů a přátel dívek s Rettovým syndromem

Czech Republic

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

Magyar Rett Szindróma Alapítvány

Hungary

Rett Syndrome Rannsóknarsjóður Guðrúnar

Iceland

Rett Syndrome Association of Ireland

Ireland

איגוד תסמונת רט

Israel

Associazione Italiana Rett (AIRETT)

Italy

Agotos labdaros ir paramos fondas

Lithuania

Nederlandse Rett Syndroom Vereniging (NRSV)

Netherlands

Norsk Forening for Rett Syndrom

Norway

Ogólnopolskie Stowarzyszenie Pomocy Osobom z Zespołem Retta (OSPOzZR)

Poland

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 Sendromlu Aileler Yardımlaşma ve Dayanışma Derneği

Turkey

Association

France

Rett Syndrome Society of Alberta

Alberta

Rett Syndrome Society of BC

British Columbia

Manitoba Rett Syndrome Association

Manitoba

Ontario Rett Syndrome Association (ORSA)

Ontario

Saskatchewan Rett Syndrome Association

Saskatchewan

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