About IRSF

Mission

The core mission of the IRSF is to fund research for treatments and a cure for Rett syndrome while enhancing the overall quality of life for those living with Rett syndrome by providing information, programs, and services.

Profile

Facts about the International Rett Syndrome Foundation:

  • The International Rett Syndrome Foundation (IRSF) is a 501(c)(3) non-profit corporation established in July 2007 through the strategic merger of the Rett Syndrome Research Foundation and the International Rett Syndrome Association.
  • IRSF is the largest private source of funds for biomedical and clinical research on Rett syndrome. The Foundation directs almost 90% of each dollar donated directly to program services. All donations specifically earmarked for research will be honored.

Leadership

Financial Status, Terms & Policies

History

The International Rett Syndrome Foundation (IRSF) was formed on July 1st, 2007 when the International Rett Syndrome Association (IRSA) and the Rett Syndrome Research Foundation (RSRF) consolidated resources in a historic merger.

The International Rett Syndrome Association was formed in 1984 when a determined group of parents (led by Kathy Hunter) banned together to try to fund research for cures and treatments, support other families with Rett syndrome, and raise public awareness. Over the years the organization raised tremendous public awareness, brought life-changing care to families, and helped foster and fund some significant research breakthroughs (including the discovery of the MECP2 gene that causes Rett syndrome).