Community Connections

Connect with Us

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.

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.

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.

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.

Asia-Pacific

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

Europe

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

Canada

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

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

IRSF Blog

IRSF Names Laura Hameed as Chief Executive Officer

Accomplished nonprofit and biotech leader brings decades of rare disease experience to guide IRSF's next chapter of impact and growth.

European Commission grants NTI64 Orphan Drug Designation for Rett Syndrome

Neurogene Reports Fourth Quarter and Full Year 2024 Financial Results and Highlights Recent Updates

Aware That We’re Rare: The Power of Community in Rare Diseases

As rare disease advocates gathered for Rare Disease Week 2025, they reinforced a powerful truth: when we come together, our voices are impossible to ignore.

IRSF Awards Nearly $2 Million in Grants to Advance Rett Research

This funding supports seven groundbreaking projects investigating Rett syndrome's pathology and potential new treatments.

Clinical Data from Open-Label DAFFODIL™ Study Evaluating Long-term Safety of DAYBUE® (trofinetide) in Patients with Rett Syndrome Published in Med

Taysha Gene Therapies Reports Full-Year 2024 Financial Results and Provides Corporate Update

Acadia Pharmaceuticals Submits Marketing Authorization Application to the European Medicines Agency for Trofinetide for the Treatment of Rett Syndrome

IRSF Leadership Update

After a 7-year tenure, Melissa Kennedy stepped down as CEO at the end of 2024. Board member and Rett mom, Leslie Mehta, will act as interim CEO as a national search for a new leader commences.

Neurotech Receives US Orphan Drug Designation in Rett Syndrome

Update on Patient SAE & Discontinuation of High Dose Protocol (Community Letter)

Raising a Hand: A Journey of Healing, Hope, and Friendship

Inconceivable. That’s the word that photographer Dave Clements uses to describe the emotion swelling in his stomach when thinking back to March 9, 2003.

Update on Patient SAE (Community Letter)

Neurogene Provides Update on NGN-401 Gene Therapy Clinical Trial for Rett Syndrome

Taysha Gene Therapies Reports Third Quarter 2024 Financial Results and Provides Corporate Update

Neurogene Community Letter

Neurogene Reports Positive Interim Efficacy Data from First Four Low-Dose Pediatric Participants in NGN-401 Gene Therapy Clinical Trial for Rett Syndrome

DAYBUE in the Real World

Answers to your most frequently asked questions and resources to find out more about the first-ever FDA-approved treatment of Rett syndrome.

Acadia Pharmaceuticals Announces Health Canada Approval of DAYBUE™ (trofinetide) for the Treatment of Rett Syndrome

Acadia Rett Sibling Scholarship Applications Now Open (Community Letter)

Neurotech Files for US Orphan Drug Designation in Rett Syndrome

Transforming the Landscape of Rett Research

The International Rett Syndrome Foundation (IRSF) hosted its annual scientific meeting in Westminster, Colorado on June 18-19, 2024, as part of its ASCEND 2024 Rett Syndrome National Summit. By Mackenzie […]

IRSF Welcomes Two to Board of Directors

New board members Parthy Evans and Steve Marconi will enhance IRSF's mission to advance Rett syndrome research and support for families.

Neurogene Announces RMAT Designation for NGN-401 Investigational Gene Therapy for Rett Syndrome

Clinical Data from Open-Label Extension LILAC-1™ and LILAC-2™ Studies Evaluating Long-Term Safety and Efficacy of DAYBUE™ (trofinetide) in Patients with Rett Syndrome Published in Med

Center of Excellence Clinic Network Expanded

Three additional clinics recognized for best-in-class Rett syndrome care.

IRSF Announces Expansion of Scientific Leadership

The new leadership appointments include a key promotion and new hire to advance research and clinical development for Rett syndrome.

Taysha Gene Therapies Announces Positive Clinical Data Across Adult and Pediatric Patients from Low Dose Cohort in Ongoing REVEAL Phase 1/2 Trials Evaluating TSHA-102 in Rett Syndrome

Neurogene Announces First Patient Dosed in High-Dose Cohort of NGN-401 Gene Therapy Clinical Trial for Rett Syndrome

Acadia Pharmaceuticals Presents DAYBUE™ (trofinetide) Real-World Evidence and Additional Data in Rett Syndrome at the 2024 International Rett Syndrome Foundation (IRSF) Annual Scientific Meeting

Neurogene Announces NGN-401 Gene Therapy for Rett Syndrome Selected by FDA for START Pilot Program

A Letter to the Rett Community with Updates on DAYBUE

Unravel Biosciences Receives FDA Orphan Drug Designation for Vorinostat (RVL-001) as a Treatment for Rett Syndrome

Unravel Announces Collaboration with Vanderbilt University Medical Center to Support Upcoming Multicenter U.S. Clinical Study in Rett Syndrome that Includes RVL-001

Neurogene Receives Australian HREC Approval for Trial

Neurogene Presents Favorable Safety Data from Phase 1/2 Trial of NGN-401 Gene Therapy for Rett Syndrome during ASGCT Annual Meeting

Neurotech Reports Significant Clinical Benefits and Safety in Phase I/II Rett Syndrome Clinical Trial

Taysha Gene Therapies Announces Regenerative Medicine Advanced Therapy (RMAT) Designation Granted by U.S. FDA for TSHA-102 in Rett Syndrome

Acadia Pharmaceuticals Announces Trofinetide New Drug Submission for Treatment of Rett Syndrome Has Been Accepted for Filing and Priority Review by Health Canada

Spotlight on Communication: An Interview with Dr. Theresa Bartolotta

For Theresa Bartolotta, Ph.D., CCC-SLP, good things have come through community. Bartolotta, a speech-language pathologist (SLP) with more than 40 years of clinical experience, discovered her passion for helping others […]

Advocating for YOU: Rare Disease Week on Capitol Hill

IRSF works tirelessly to advocate for you and your loved one with Rett syndrome. Our work takes many forms, our persistence is often unseen, and our successes are the result […]

Unravel Announces Initiation of RVL001 Clinical Trial Material Manufacturing to Support Upcoming US and International Clinical Trials in Rett Syndrome

Taysha Shares Interim Clinical Data from Cohort One on FY23 Financial Results Call

DepYmed Receives Clearance from U.S. Food and Drug Administration to Initiate Phase 1 Clinical Trial for DPM-1003 for the Treatment of Rett Syndrome

All Phase I/II Rett Syndrome Patients to Receive NTI164 Treatment for a Total of 52 Weeks

Neurogene Announces Expansion and Plans for More Rapid Patient Enrollment of Rett Syndrome Gene Therapy Clinical Trial

Neurogene Announces Expansion of Gene Therapy Clinical Trial

Today, Neurogene announced plans to expand and more rapidly enroll patients their Phase 1/2 clinical trial of investigational gene therapy NGN-401. For the full press release, click here. Key Facts: […]

Taysha Gene Therapies Announces Updates to TSHA-102 Clinical Program in Rett Syndrome

Taysha Gene Therapies Adolescent & Adult Study Expanded to U.S.

Today, Taysha Gene Therapies shared several exciting updates on their REVEAL Phase 1/2 clinical trial of investigational gene therapy TSHA-102: The study will now expand to include adolescent and adult […]

My Rett Ally: Revolutionizing Care Management for Rett Families

On a recent visit to the emergency room, it took just seconds for Samantha Brant to pull up a detailed, up-to-date medication list for her daughter, Macy. Macy lives with […]

Taysha Gene Therapies Announces First Pediatric Patient Dosed with TSHA-102 in REVEAL Phase 1/2 Pediatric Trial in Rett Syndrome

Taysha Gene Therapies Doses First Pediatric Patient in U.S. Gene Therapy Clinical Trial

Taysha Gene Therapies today announced the dosing of the first pediatric patient in their REVEAL Phase 1/2 trial of investigational gene therapy TSHA-102. For Taysha’s full press release, click here. […]

Anavex Announces Topline Results from Phase 2/3 EXCELLENCE Clinical Study in Pediatric Rett Syndrome

Neurogene Announces Closing of Merger with Neoleukin Therapeutics and Concurrent Private Placement of $95 Million

Neurogene Doses First Patients in Phase 1/2 Trial of NGN-401 for the Treatment of Female Pediatric Patients with Rett Syndrome

Neurogene Announces First Pediatric Patients Dosed in US Gene Therapy Clinical Trial

We’re excited to share that today Neurogene announced that two pediatric patients have been dosed in their Phase 1/2 trial of investigational gene therapy NGN-401. For Neurogene’s full press release, […]

Taysha Gene Therapies Announces Expanded Eligibility in REVEAL Phase 1/2 Adult Trial to Include Adolescent Rett Syndrome Patients

Early, interim data from the first two adult patients dosed shared in Taysha Q3 Financials

Lucy Therapeutics Expands Cutting-Edge Medical Research Program

Taysha Gene Therapies Announces Second Patient Dosed with TSHA-102 in the REVEAL Phase 1/2 Adult Trial for the Treatment of Rett Syndrome

Neurotech Completes Patient Recruitment in Phase I/II Rett Syndrome Clinical Trial

Taysha Gene Therapies Announces Fast Track Designation Granted by U.S. FDA for TSHA-102 in Rett Syndrome

Taysha Gene Therapies Reports Initial Clinical Data from First Adult Rett Syndrome Patient Dosed in REVEAL Phase 1/2 Trial and Provides Corporate Update with Second Quarter 2023 Financial Results

Taysha Gene Therapies Updates Community on Positive Initial Findings and Expansion of TSHA-102 Clinical Trial

Today, Taysha Gene Therapies made several exciting announcements about the progress of their REVEAL Phase 1/2 trial in Canada and the future study of their gene therapy, TSHA-102. To read […]

Taysha Gene Therapies Announces Positive Recommendation from Independent Data Monitoring Committee of REVEAL Phase 1/2 Trial in Rett Syndrome

Introducing My Rett Ally: A New Tool to Support Caregivers

My Rett Ally, a web application powered by mejo, is specifically designed for Rett syndrome patients and families to simplify and enhance care coordination.

Acadia Pharmaceuticals Acquires Ex-North American Rights to Trofinetide and Global Rights to Neuren’s NNZ-2591 in Rett Syndrome and Fragile X Syndrome

Acadia Pharmaceuticals Acquires International Rights to Trofinetide

BIG NEWS for our international Rett syndrome community! Today, Acadia Pharmaceuticals announced they have acquired the rights to make trofinetide available for the treatment of Rett syndrome across the globe. […]

RettAway Reflections

By Samantha Brant, Family & Community Engagement Manager, and mom to Macy As I returned home from this year’s RettAway at Morgan’s Inspiration Island, my heart swelled with not only […]

IRSF Welcomes Three New Members to its Board of Directors

Mary Engel, Laura Stoppel, and Steve Wood have been appointed to the IRSF Board, effective July 1, 2023.

Long-term Clinical Study Demonstrates Disease-Modifying Effects of ANAVEX®2-73 for Rett Syndrome

Taysha Gene Therapies Provides Clinical Updates for Investigational Programs TSHA-120 in Giant Axonal Neuropathy (GAN) and TSHA-102 in Rett Syndrome at R&D Day

Clinical Trial Updates from Taysha & Anavex

We are excited to share news from two pharmaceutical companies working on potential treatments and cures for Rett syndrome. Taysha Gene Therapies Taysha Gene Therapies shared that they are encouraged […]

Neurogene Opens Enrollment for U.S. Gene Therapy Clinical Trial (Community Letter)

Neurogene Announces Locations & Opens Enrollment for US Gene Therapy Clinical Trial

We’re excited to share that today Neurogene announced the locations and began enrolling for the first U.S. Phase 1/2 clinical trial of their investigational gene therapy, NGN-401. Enrollment at Texas […]

Completion of ANAVEX®2-73 (blarcamesine) EXCELLENCE Phase 2/3 Rett Syndrome Clinical Trial

Taysha Gene Therapies Announces First Patient Dosed with TSHA-102 in the REVEAL Phase 1/2 Trial Under Investigation for the Treatment of Rett Syndrome

Acadia Pharmaceuticals Announces DAYBUE™ (trofinetide) is Now Available for the Treatment of Rett Syndrome

Neurotech to Launch Phase II Clinical Trial in Rett Syndrome

A First for Rett: FDA Approves Trofinetide for Treatment of Rett Syndrome!

This first-ever treatment is approved for individuals with Rett syndrome. (Updated March 19, 2023) On March 10, 2023, Acadia Pharmaceuticals announced that their investigational drug, Trofinetide, has been approved by […]

Acadia Pharmaceuticals Announces U.S. FDA Approval of DAYBUE™ (trofinetide) for the Treatment of Rett Syndrome in Adult and Pediatric Patients Two Years of Age and Older

LILAC-1 Study Topline Results Announced (Community Letter)

IRSF Establishes Research Fund for Males with Rett Syndrome

The fund is established thanks to an inaugural gift from the Otis Family in honor of their son, Barrett.

Unravel Biosciences Announces Positive Feedback from FDA Pre-IND Meeting on RVL001 Rett Syndrome Program

ANAVEX®2-73 (Blarcamesine) AVATAR Phase 3 Trial met Primary and Secondary Efficacy Endpoints

Taysha Gene Therapies Provides Update on TSHA-120 Program in Giant Axonal Neuropathy and a 2023 Corporate Outlook

IRSF Awards $4.4M in Rett Syndrome Research Grants

Our commitment to setting up the next wave of Rett breakthroughs continues with the largest annual investment in our Foundation’s history.

Neurogene Announces FDA Clearance of IND for NGN-401 Gene Therapy for Children with Rett Syndrome

Neurogene Announces First Rett Syndrome Gene Therapy Trial in U.S.

We’re excited to share that Neurogene announced today that the FDA approved their Investigational New Drug Application (IND) to launch a clinical trial for their gene therapy treatment NGN-401 in […]

IRSF Receives $500,000 Donation from Vezbi Super App

Along with the donation, Vezbi will be creating custom Micro-apps and Communities for use by IRSF and the community of families impacted by Rett syndrome that the foundation serves.

Flu, COVID, & RSV: A Message to our Rett Community

By Dr. Tim Benke, IRSF Medical Advisor As many of you know, the United States is currently facing the triple impact of flu, RSV, and COVID-19. These respiratory illnesses are […]

Taysha Begins Recruitment for Gene Therapy Trial

Next Huge Milestone for Rett The last 12 months have been an unprecedented time for Rett syndrome. In December 2021, Acadia Pharmaceuticals reported that the first (and only) Phase 3 […]

Astellas and Taysha Gene Therapies Announce Strategic Investment to Support Development of Taysha’s AAV-based Gene Therapy Programs

Your Voice Matters to the FDA & Pharmaceutical Industry

By Dr. Dominique Pichard, IRSF CSO – The patient voice has increasingly become a focus for the Food and Drug Administration (FDA) in the drug development process. Thanks to years […]

Acadia Pharmaceuticals Announces Trofinetide New Drug Application for the Treatment of Rett Syndrome has been Accepted for Filing and Review by U.S. FDA

FDA Grants Trofinetide Priority Review

ACADIA has shared the exciting news that the US Food and Drug Administration (FDA) has reviewed the documents received as part of the New Drug Application (NDA) for trofinetide, and […]

In-Person Strollathons Are Back!

In September IRSF returns with our in-person Strollathons! These nationwide fundraisers bring together local communities to go ALL IN for treatments and a cure for Rett syndrome. Since 2004, these […]

IRSF Expands Center of Excellence Network

The International Rett Syndrome Foundation is expanding our community’s access to best-in-class care by adding four Rett syndrome clinics to our Center of Excellence network. This expansion helps to fulfill […]

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Facebook Groups and Support Forums

Parents of Newly Diagnosed Children (PONDS) Groups

IRSF Managed Social Networks

Other Support Forums

Explore Events

Rett Syndrome Associations

Rett Syndrome Angels

Northwest Rett Syndrome Association (NWRSA)

New Jersey Rett Syndrome Association (NJRSA)

Midwest Rett Syndrome Foundation (MRSF)

Rocky Mountain Rett Association (RMRA)

International Rett Resources

Asia-Pacific

Rett Syndrome Association of Australia (RSAA)

China Rett Syndrome Association

Indian Rett Syndrome Foundation

Japan Rett Syndrome Association

Rett New Zealand

Taiwan Rett Syndrome Association

Europe

Österreichische Rett-Syndrom Gesellschaft (ORSG)

Belgische Rett Syndroom Vereniging (BRSV)

Spolek rodičů a přátel dívek s Rettovým syndromem

Landsforeningen Rett-syndrom

Rett Finland

Association Française du Syndrome de Rett

Rett Deutschland e.V.

ΕΝΩΣΗ ΓΟΝΕΩΝ ΚΑΙ ΦΙΛΩΝ ΑΤΟΜΩΝ ΜΕ ΣΥΝΔΡΟΜΟ ΡΕΤ

Magyar Rett Szindróma Alapítvány

Rett Syndrome Rannsóknarsjóður Guðrúnar

Rett Syndrome Association of Ireland

איגוד תסמונת רט

Associazione Italiana Rett (AIRETT)

Agotos labdaros ir paramos fondas

Nederlandse Rett Syndroom Vereniging (NRSV)

Norsk Forening for Rett Syndrom

Ogólnopolskie Stowarzyszenie Pomocy Osobom z Zespołem Retta (OSPOzZR)

Associação Nacional de Pais e Amigos Rett (ANPAR)

La Asociación Española de Síndrome de Rett (AESR)

Asociación catalana de Síndrome de RETT

Nationellt Center för Rett syndrom och närliggande diagnoser

Rett Verein Schweiz

Rett Sendromlu Aileler Yardımlaşma ve Dayanışma Derneği

Association

Canada

Rett Syndrome Society of Alberta

Rett Syndrome Society of BC

Manitoba Rett Syndrome Association

Ontario Rett Syndrome Association (ORSA)

Saskatchewan Rett Syndrome Association

Latin America

Fundación SinRett

Associação Brasileira de Sindrome de Rett (ABRE-TE)

Fundación Caminamos Por Ellas y Ellos Síndrome de RETT Chile

Somos Rett Colombia

Fundación Rett

Asociación Rettos de Amor México

Sindrome Rett Uruguay

IRSF Blog

IRSF Names Laura Hameed as Chief Executive Officer

European Commission grants NTI64 Orphan Drug Designation for Rett Syndrome

Neurogene Reports Fourth Quarter and Full Year 2024 Financial Results and Highlights Recent Updates

Aware That We’re Rare: The Power of Community in Rare Diseases

IRSF Awards Nearly $2 Million in Grants to Advance Rett Research

Clinical Data from Open-Label DAFFODIL™ Study Evaluating Long-term Safety of DAYBUE® (trofinetide) in Patients with Rett Syndrome Published in Med

Taysha Gene Therapies Reports Full-Year 2024 Financial Results and Provides Corporate Update

Acadia Pharmaceuticals Submits Marketing Authorization Application to the European Medicines Agency for Trofinetide for the Treatment of Rett Syndrome

IRSF Leadership Update

Neurotech Receives US Orphan Drug Designation in Rett Syndrome

Update on Patient SAE & Discontinuation of High Dose Protocol (Community Letter)

Raising a Hand: A Journey of Healing, Hope, and Friendship

Update on Patient SAE (Community Letter)

Neurogene Provides Update on NGN-401 Gene Therapy Clinical Trial for Rett Syndrome

Taysha Gene Therapies Reports Third Quarter 2024 Financial Results and Provides Corporate Update

Neurogene Community Letter

Neurogene Reports Positive Interim Efficacy Data from First Four Low-Dose Pediatric Participants in NGN-401 Gene Therapy Clinical Trial for Rett Syndrome

DAYBUE in the Real World

Nationellt Center för Rett syndrom och närliggande diagnoser