National Resources

There are many trustworthy, nation-wide services and supports available. Most resources included here are not Rett syndrome-specific, but legal support, funding resources and national special needs organizations can be invaluable. This list also provides information on donating your child’s blood for Rett syndrome research. If you have national resources you would like to share with us, please email [email protected].

The Individuals with Disabilities Education Act (IDEA)

IDEA is a law enacted in 1975 ensuring services to children with disabilities throughout the nation. IDEA governs how states and public agencies provide early intervention, special education and related services to eligible infants, toddlers, children and youth with disabilities. Infants and toddlers with disabilities (birth-2) and their families receive early intervention services under IDEA Part C. Children and youth (ages 3-21) receive special education and related services under IDEA Part B.


Protected Tomorrows

International Rett Syndrome Foundation Professional Advisor: Mary Anne Ehlert, Protected Tomorrows. Protected Tomorrows, Inc. is an advocacy firm that enhances the lives of people with special needs through a comprehensive life planning process.


Center for Parent Information and Resources

There are many ways to find someone who will help be your expert at the negotiating table if needed. There are federally funded agencies, and often the best source for a particular type of Advocate is by word of mouth – ask other special needs parents in your community.


Special Needs Alliance

The Special Needs Alliance is a national, non-profit organization committed to helping individuals with disabilities, their families and the professionals who serve them. Many of our member attorneys have family members with special needs; all of them work regularly with public benefits, guardianships/conservatorships, planning for disabilities and special education issues.


Special Needs Answers

The Academy of Special Needs Planners consists of special needs planning professionals such as attorneys, financial planners and trust officers that assists them in providing the highest quality service and advice to persons with special needs and to their families.


eParent.com

eParent.com provides practical advice, emotional support and the most up-to-date educational information for families of children and adults with disabilities and special healthcare needs as well as to the physicians, allied healthcare professionals and educated professionals who are involved in their care and development.


The Arc Across a Lifetime

The Arc promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes.

Coriell Cell Repository

The advancement of scientific discoveries towards treatments and a cure for Rett syndrome depend on the ability of researchers to study how mutations in the MECP2 gene affect growth and development. You can help by donating a sample of your 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. Visit coriell.org for more information.

Harvard Brain Tissue Resource Center

The passing of a loved one, especially a loved one who has lived with the diagnosis of Rett syndrome, can be very difficult. You may find solace knowing that in death they can give the gift of hope to finding treatments and a cure for those living with Rett syndrome. If you are interested in learning more about organ donation, visit the Harvard Brain Tissue Resource Center at hbtrc.mclean.harvard.edu. 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 [email protected].

Magic Wheelchair

Magic Wheelchair is a nonprofit organization that makes epic costumes for children in wheelchairs. Their vision is to put a smile on the face of every child in a wheelchair by transforming their wheelchairs and creating custom costumes for them at no expense to their families.


Disability Resources for College Students guide

LearnHowToBecome.org is a comprehensive career resource with a mission to help students and aspiring professionals understand what it takes to land their perfect career. This resource guide for students with disabilities contains information for students who are affected by a variety of disabilities.


Retail Savings Guide for People with Disabilities

This guide provides a detailed walkthrough of discounts and special offers for individuals with disabilities.


Kids Wish Network

Kids Wish Network grants wishes for children who are between the ages of 3 and 18 and have a life-threatening illness. Anyone can refer a child, including a family member, friend, nurse, doctor, or social worker. In addition, the organization’s “Hero of the Month” program was developed to honor children also between the ages of 3 and 18 who have overcome life-altering circumstances and have stayed in or been treated at one of our Hero pediatric care facilities.


The Dream Factory

The Dream Factory is the largest children’s wish-granting organization that does not limit its mission to children who have life-threatening illness. The organization believes children with chronic illnesses and disorders also suffer from substantial emotional and physical pain.


Make-A-Wish America

Make-A-Wish® creates life-changing wishes for children with critical illnesses.


Autism on the Seas

Autism on the Seas has collaborated with Royal Caribbean International since 2007 developing cruise vacation services to accommodate adults and families living with children with Special Needs, including all Cognitive, Intellectual and Developmental Disabilities. These services quickly expanded to other cruise lines.

The Assistance Fund

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.

To learn more read the press release announcement, or apply today at https://enroll.tafcares.org/, or call (855) 509-2452.

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.

Funding Sources

In addition to private insurance, Medicaid, and Supplemental Security Insurance (SSI), look for community resources and philanthropy groups such Rotary International, Lion’s Club, Kiwani’s and Make-A-Wish to help fund conferences, medical appointments, therapies, equipment, transportation, housing and modifications.

Help Toolkit for SSI/SSDI Applications

This helpful toolkit walks applicants and/or people supporting them prepare and submit high-quality SSI/SSDI applications when they are unable to access a SOAR-trained provider.

 

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.

Rett Syndrome: A Devastating Neurodevelopmental Disorder

A clinical proceedings white paper published in July 2023 by the Clinical Neurological Society of America (CNSA) to share with your physician. With its white paper series, CNSA hopes to expand its educational resource offerings while raising awareness about unmet needs in neurology.