IRSF Resource Library
Our Rett Syndrome Resource Library is your go-to hub for essential tools, information, and guidance about Rett syndrome. Whether you’re just beginning your journey or seeking ongoing support, you’ll find a comprehensive collection of resources designed to empower and assist every step of the way.
IRSF Family Resources
Developed in collaboration with trusted partners and our clinical network, these tools and guidelines offer reliable, practical support to help families navigate the complexities of life with Rett syndrome.
- Clinicians, Families
My Rett Ally
My Rett Ally is a free web app made exclusively for the Rett community that helps you simplify, organize and share your child’s most important medical & care information all in one safe place. Features include an organized medical journal, customizable tracking categories, and document storage system.
- Clinicians, Families
Comprehensive Care Guidelines
Developed in collaboration with Rett syndrome experts throughout the U.S., the Rett Syndrome: Comprehensive Care Guidelines are intended to be used to support a meaningful partnership between caregivers and the physicians, nurses, and therapists who are involved in the care of your loved one with Rett syndrome. This is a medical resource, intended for families to share with their providers, to ensure their loved one is receiving care that is recommended by leading Rett syndrome experts.
IRSF would like to express gratitude to the 18 Rett syndrome Centers of Excellence and experts that volunteered time and effort to develop this list of recommendations.
- Clinicians, Families
Transition of Care Toolkit
IRSF’s Rett Syndrome Transition of Care Toolkit is designed to empower parents and guide healthcare providers through the conversations necessary to transition a loved one to adult medical care. Every journey to adulthood is different, but with this Toolkit, families can face the challenges of aging with Rett head-on thanks to the insights and learnings of Rett caregivers who have been there before.
The TOC Toolkit was developed by IRSF in collaboration with the Child Neurology Foundation as part of the ACP HVC pediatric to adult care transition project.
Rett Syndrome Resources
Resources from IRSF and our trusted partners are listed below in alphabetical order. Use the filter to find resources specifically for families, researchers, and healthcare providers, or search for the resource you’re looking for. Have a resource to add to our library? Email us.
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Resource for
- Clinicians, Families
ActiveRett
Staying physically active is an important part of a healthy lifestyle. ActiveRett an online resource to help families, carers, therapists, and teachers to support people with Rett syndrome to live more physically active lives. ActiveRett was developed as part of a grant awarded to Telethon Kids Institute by the International Rett Syndrome Foundation to increase physical activity in Rett syndrome.
- Families
An Educational Guide to Rett Syndrome (Advocacy)
Share this document with elected officials and more to advocate and raise awareness for Rett syndrome.
- Families
Angel Awareness Cards
Personalized Angel Awareness Cards are a great way to explain Rett syndrome to those around you and encourage them to learn more.
- Families
Billy Footwear
Fashion meets function. Billy Footwear is a favorite for our families because of the ease of use for their children and adults. Use this link and receive 10% of your entire order and IRSF will receive 5% toward our mission.
- Clinicians, Families
CE Program for Communication Specialists
This flyer outlines IRSF’s continuing education program in communications geared towards communication professionals. Families should share this flyer with anyone on their care team interested in learning more about effective communication with an individual with Rett syndrome.
- Researchers
Charles River Laboratories
Resource for novel animal generation.
- Researchers
ChemBridge
ChemBridge actively designs and synthesizes novel lead-like and drug-like screening compounds and novel synthetic macrocycles based on proprietary internal designs and inspired by the latest scientific publications and collaborations with external scientists.
- Researchers
ClinVar
ClinVar is a freely accessible, public archive of reports of human variations classified for diseases and drug responses, with supporting evidence. It contains the most up-to-date information on the status of specific gene changes in the MECP2, FOXG1, and CDKL5 genes, including data from RettBASE that has been assessed against ACMG classification criteria and transferred.
- Clinicians, Families
Communication Guidelines
The Rett Syndrome Communication Guidelines are an invaluable resource for therapists, educators, and families who seek information on the assessment, intervention, and long-term management of communication in individuals with Rett syndrome. This in-depth, evidence-based publication involved the participation of over 600 professionals and caregivers across 43 countries.
- Clinicians, Families
Comprehensive Care Guidelines
Developed in collaboration with Rett syndrome experts throughout the U.S., the Rett Syndrome: Comprehensive Care Guidelines are intended to be used to support a meaningful partnership between caregivers and the physicians, nurses, and therapists who are involved in the care of your loved one with Rett syndrome. This is a medical resource, intended for families to share with their providers, to ensure their loved one is receiving care that is recommended by leading Rett syndrome experts.
IRSF would like to express gratitude to the 18 Rett syndrome Centers of Excellence and experts that volunteered time and effort to develop this list of recommendations.
- Clinicians, Families
Comprehensive Care Guidelines: Quick Reference Guide
An abridged companion piece to the Comprehensive Care Guidelines.
- Researchers
Coriell Institute Cell Repository
A tissue resource for researchers. Families can help by donating a sample of their child’s blood or tissue if they are having a routine blood draw or undergoing surgery. Coriell Cell Repository catalogs these samples and makes them available to researchers worldwide.
- Researchers
Cyagen
A facility that provides Mecp2 mouse strain breeding services for use in scientific research.
- Researchers
genOway
genOway offers preclinical models and solutions to bio-pharmaceutical and academic researchers for ultimate predictability.
- Families
Get Involved Toolkit
Learn about the opportunities to fundraise, advocate, volunteer, and more.
- Clinicians, Families
Growth Charts
Using data on over 700 affected patients in the Natural History Study of Rett Syndrome, these references are an accurate representation of growth. As a result of the study, clinicians have gained insight into growth patterns in Rett syndrome which should interpret measurements of height, weight, and head circumference.
- Families
Guide to Advocating for Rett Syndrome
Learn how to effectively advocate for Rett syndrome by sharing your story with policymakers.
- Families
Guide to Clinic Visits
A physician who truly understands Rett syndrome can make a big difference in your loved one’s life. Expert Rett providers can help direct your child’s healthcare, answer questions, and provide resources for Rett syndrome. Most clinics recommend annual visits to check in with your child and get to know your family better. Use this guide to prepare for these visits whether you are looking to visit a Rett clinic for the first time or have been taking your child to Rett clinic appointments for years.
- Researchers
Harvard Brain Tissue Resource Center (HBTRC)
The Harvard Brain Tissue Resource Center (HBTRC), now a part of the NIH NeuroBio Bank, provides access to brain tissue donated by the families of deceased individuals with Rett syndrome for research.
- Families
Harvard Brain Tissue Resource Center (HBTRC)
The passing of a loved one, especially a loved one who has lived with the diagnosis of Rett syndrome, can be very difficult. Families may find solace in knowing that in death, they can give the gift of hope to finding treatments and a cure for those living with Rett syndrome. The HBTRC has no affiliation with the Harvard Medical School Anatomical Gift Program.
For any questions related to tissue or organ donations, contact Paige Nues at pnues@rettsyndrome.org.
- Researchers
InterRett
InterRett is an international online database examining the clinical features and genetic characteristics of Rett syndrome.
- Researchers
MedChemExpress
MedChemExpress (MCE) can provide 200+ compound libraries which include Bioactive Screening Libraries, Diversity Compound Libraries, High Throughput Screening Libraries, Fragment Libraries and DNA Encoded compound Libraries (DEL). These libraries contain over 16 million available compounds.
- Researchers
MicroSource Discovery Systems, Inc.
MicroSource Discovery Systems are an economical and comprehensive source for first assay explorations.
- Researchers
Mutant Mouse Regional Resource Center
A facility that provides Mecp2 mouse strain breeding services for use in scientific research.
- Clinicians, Families
My Rett Ally
My Rett Ally is a free web app made exclusively for the Rett community that helps you simplify, organize and share your child’s most important medical & care information all in one safe place. Features include an organized medical journal, customizable tracking categories, and document storage system.
- Researchers
National Human Neural Stem Cell Resource (NHNSCR)
The National Human Neural Stem Cell Resource provides neural stem cells harvested from the post-natal, post-mortem, human and animal brain to the research community for stem cell research.
- Researchers
Prestwick Chemical Libraries
A team of in-house medicinal chemists and pharmacists has committed to selecting highly relevant screening compounds for >25 years, in order to offer a screening collection of off-patent drugs with high chemical and pharmacological diversity, as well as known bioavailability and safety in humans.
- Families
Profile Picture Frames
Use our tool to customize your social media profile picture and help us spread awareness about Rett syndrome.
- Families
Raising A Hand
Three beautifully bound collections of over 200 photos of musicians from around the world who share about themselves and gave their support to help raise funds for research to cure Rett syndrome.
- Clinicians, Families, Researchers
Rett Revealed by Acadia Pharmaceuticals
Resources, events, and stories from Acadia Pharmaceuticals, the makers of DAYBUE™ (trofinetide). Intended for use by U.S. residents.
- Researchers
RettBASE
RettBASE is a freely accessible database that was initially established over 20 years ago through funding support from IRSF, the NSW Rett Syndrome Association, and the Rett Syndrome Association of Australia (RSAA). RettBASE was established to capture MECP2 gene changes in individuals with a clinical diagnosis of Rett syndrome, that came from the published research literature or through direct submissions by clinicians or laboratories. Although the RettBASE link is live for now, it is no longer being updated, and we recommend that ClinVar should be used to obtain the most up to date information about the status of specific gene changes in MECP2. In addition, as the Rett syndrome community transitions to using ClinVar, to meet interim requests for submission of information relating to specific MECP2 gene changes into RettBASE, an online form has been created (web form link). This link will be accepting submissions through the end of 2024. For questions, please contact Dr. Nupur Garg at research@rettsyndrome.org.
- Families
RettEd Video Library
Learn more about common medical concerns in Rett syndrome, including seizures, disrupted sleep, puberty, and more by searching our RettEd Video Library Playlist on YouTube.
- Families
Social Media Awareness Graphics
Download our social media posts to share across platforms, educate your network on Rett syndrome, and encourage them to donate to help advance trailblazing research for treatments and a cure. You can use these graphics during October’s Rett Syndrome Awareness Month and beyond. Be sure to tag us on Facebook, Instagram, or X when you post!
- Families
State Family Empowerment Representatives
Many U.S. states have a dedicated volunteer who plays a valuable role in empowering our families with both information and connectivity. These representatives can help you find resources in your state and connect with other families in your area.
- Families
State Proclamation Resources
October is Rett Syndrome Awareness Month and governors in several states honor our effort by signing proclamations declaring October to be Rett Syndrome Awareness Month in their states. These documents were developed to help you procure proclamations in your state.
- Families
The Assistance Fund (TAF)
The Assistance Fund is an independent charitable patient assistance organization helping patients and families by providing financial assistance for the cost of treatment and other health-related services. Through its Rett Syndrome Financial Assistance Program, eligible individuals can receive assistance for all FDA-approved treatments for Rett syndrome, including:
Prescription drugs (copays, deductibles, and coinsurance)
Health insurance premiums
Therapy administration costs
Disease management (such as prescribing-physician copayments),
Treatment-related travel costs,
Diagnostic laboratory tests, and genetic testing.
Apply today on their website or call (855) 509-2452.
- Researchers
The Jackson Laboratory
A facility that provides Mecp2 mouse strain breeding services for use in scientific research.
- Families
The PAN Foundation
The PAN Foundation is a national organization that helps underinsured patients with life-threatening, chronic, and rare diseases get the medications and treatments they need by assisting with their out-of-pocket costs. Disease-specific grants are available for eligible patients, including a Rett syndrome fund.
- Clinicians, Families
The Rett Syndrome Handbook
The Rett Syndrome Handbook is your go-to guide for navigating life with Rett syndrome. Packed with expert advice, practical tips, and essential information, this comprehensive resource empowers families to better understand and manage the complexities of Rett. Whether you’re newly diagnosed or years into your journey, this handbook is designed to support you every step of the way.
*Please Note: The Handbook was last updated in 2007. For the most up-to-date information on the care of your child consult your doctor or medical provider.
- Researchers
Thermo Scientific
Formerly Maybridge, Thermo Scientific screening and fragment libraries are designed to help you accelerate drug discovery.
- Clinicians, Families
Transition of Care Toolkit
IRSF’s Rett Syndrome Transition of Care Toolkit is designed to empower parents and guide healthcare providers through the conversations necessary to transition a loved one to adult medical care. Every journey to adulthood is different, but with this Toolkit, families can face the challenges of aging with Rett head-on thanks to the insights and learnings of Rett caregivers who have been there before.
The TOC Toolkit was developed by IRSF in collaboration with the Child Neurology Foundation as part of the ACP HVC pediatric to adult care transition project.
- Researchers
University of Maryland Brain and Tissue Bank (UMBTM)
The University of Maryland Brain and Tissue Bank (UMBTB) is a centralized repository for the collection and distribution of brain tissue for medical research.
Additional Resources
IRSF provides easy, searchable access to ongoing clinical trials, continuing medical education opportunities for healthcare providers, and more. These resources help families and professionals stay informed about the latest developments and available support.
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