Family Support

Family Matters

FamilyMatters is a series of topical questions posed to various IRSF online Rett communities by the IRSF Family Advisory Board (FAB). Our goal is to tap into the vast wisdom of parents and caregivers who most often are the best resource for solutions to the practical, common, day-to-day issues, concerns and dilemmas we all face. The community answers will be summarized here for everyone's benefit. 

Care for the Caregiver

As parents of children with Rett syndrome, we face challenges - mentally, spiritually, emotionally and physically. We know that out of sight is never out of mind.

Peer-to-Peer Support

The Regional Representative Program has been established to provide emotional support, information and resources to families affected by Rett syndrome. It is used as a vehicle to promote family gatherings and fundraisers to support IRSF’s mission. It is an integral part of IRSF. The program has greatly expanded over time, closing in on acquiring a Regional Rep for each state in the US.

Assistance Programs

Medicaid is a combined state and federal assistance program for those who are disabled, low income, over sixty-five and blind, or recipients of Aid to Families with Dependent Children (AFDC) or Supplemental Security Income (SSI). Although programs vary from state to state, given the severity of disability of girls with Rett syndrome (RTT), there are often ways to qualify for Medicaid, regardless of the family’s income or assets. Your I.R.S.F. Regional Representative can help guide you through this process.

Advocacy Resources

Get involved and help raise awareness of Rett syndrome in your state. Click to access all of the advocacy resources you will need to get started. 

Annual Conference

IRSF carefully and thoughtfully plans an annual conference for families, caregivers, and allied health professionals. It is the only one of its kind where the parents and professionals of those with Rett syndrome and Related Disorders come together from all over the world, under one roof, to learn the most current recommended care and advocacy strategies for every stage of life, and hear first-hand the latest in research and clinical trials.