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.

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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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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.
Asia-Pacific
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
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

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

IRSF Leadership Update

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…


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 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…

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



Transforming the Landscape of Rett Research
The International Rett Syndrome Foundation (IRSF) hosted its annual scientific meeting in Westminster, Colorado on June…

IRSF Welcomes Two to Board of Directors
The International Rett Syndrome Foundation (IRSF), a leading patient advocacy foundation dedicated to funding research and…

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. The International Rett Syndrome Foundation (IRSF) proudly…

IRSF Announces Expansion of Scientific Leadership
The new leadership appointments include a key promotion and new hire to advance research and clinical…

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


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 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)…

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…

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…

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…

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…

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…

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…

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


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…

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…

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…

RettAway Reflections
By Samantha Brant, Family & Community Engagement Manager, and mom to Macy As I returned home…

IRSF Welcomes Three New Members to its Board of Directors
The International Rett Syndrome Foundation (IRSF), a mission-driven advocacy foundation focused on funding research and supporting…

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…

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…

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


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…

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


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…

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…

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…

IRSF Receives $500,000 Donation from Vezbi Super App
International Rett Syndrome Foundation (IRSF) is proud to announce that it is the recipient of a…

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…

Taysha Begins Recruitment for Gene Therapy Trial
Next Huge Milestone for Rett The last 12 months have been an unprecedented time for Rett…

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…

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…

In-Person Strollathons Are Back!
In September IRSF returns with our in-person Strollathons! These nationwide fundraisers bring together local communities to…

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…

Acadia Pharmaceuticals Submits New Drug Application to the U.S. FDA for Trofinetide for the Treatment of Rett Syndrome

The Summit of Hope and Healing: ASCEND 2022 Rett Syndrome National Summit
By Katie Busch, IRSF Program Coordinator – During the last week of April 2022, the International…

IRSF Launches Clinical Trial Committee to Support the Development of Rett Syndrome Treatments
The Clinical Trial Committee includes 14 leading U.S. Rett syndrome specialists CINCINNATI – (May 31, 2022)…

Accelerating Discoveries in Rett Research: 2022 IRSF Rett Syndrome Scientific Meeting
In April 2022, the International Rett Syndrome Foundation hosted the IRSF Rett Syndrome Scientific Meeting in…

Alcyone Presents Preclinical Data on Gene Therapy Programs with The Center for Gene Therapy at The Abigail Wexner Research Institute (AWRI) at ASGCT 2022

Taysha Rett Syndrome Community Update
From IRSF: 2022 is a big year for Rett syndrome: the return of an in-person Family…

Taysha Gene Therapies Announces Initiation of Clinical Development of TSHA-102 in Rett Syndrome

Federal Funding Bill for 2022 Supports Research for Rett Syndrome
CINCINNATI – March 22, 2022 – The Omnibus Fiscal Year 2022 (FY22) appropriations bill passed by…

Acadia Pharmaceuticals and Stoke Therapeutics Announce Collaboration to Pursue Multiple RNA-based Treatments for Severe and Rare Genetic Neurodevelopmental Diseases
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