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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.
  • IRSF believes the fastest way to a cure and treatments includes making significant and strategic investments in Research while bolstering Family Support, Public Awareness, and Advocacy programs.
  • The goal of IRSF is to not only fund the highest quality research, but also to focus on projects that will accelerate the speed with which basic science discoveries are translated into clinical application for patients with Rett syndrome.
  • IRSF organizes and sponsors the annual Rett Syndrome Symposium which gathers researchers and clinicians from around the world to exchange the latest information and set new research directions.
  • IRSF organizes and sponsors the annual International Rett Syndrome Foundation Conference which provides continuing educational opportunities and connections to parents, family members, therapists, teachers, physicians and other individuals involved in the day-to-day care of individuals with Rett syndrome. Each year the Conference is held in different parts of the U.S.
  • IRSF publishes a variety of print, online, and media materials aimed to help provide the best and most current information to families and extended caretakers of loved ones living with Rett syndrome.
  • IRSF maintains not only a database of individuals with Rett syndrome, but also of physicians familiar with the disorder. From this international database, IRSF is capable of projecting accurate statistics, patient referral and family networking.