Rett Syndrome

The International Rett Syndrome Foundation is a nonprofit with a 40-year history that has been closely involved and in aid of gene therapy and clinical trials to learn more about the landscape of Rett Syndrome.

Their website writes:

Today, as the International Rett Syndrome Foundation, we continue our almost 40-year commitment to creating a world without Rett. We remain focused on accelerating research to treat and cure Rett syndrome as we empower families with information, knowledge, and connectivity.

In 1983, a small dedicated group of parents whose children had Rett syndrome formed the first non-profit to focus exclusively on Rett syndrome – International Rett Syndrome Association (IRSA). In 2007, IRSA and Rett Syndrome Research Foundation (RSRF) consolidated resources to better serve families and maximize research investments toward a cure. The International Rett Syndrome Foundation (IRSF) emerged with a mission to accelerate research and empower families that builds upon these foundations’ pioneering work toward care and cure.

Rett Syndrome Research Trust

The RSRT was founded in 2008 to find a cure for this rare syndrome. Their website, which can be found here, writes:

At RSRT we are relentless in our dedication to advancing the research to a cure. This is our goal. This is our passion and our obsession. We won’t rest until we achieve it.

For us, it’s personal. Our chief executive officer, chief development officer, and family liaison all have a child with Rett. Twelve of our board members have a child, grandchild, or sibling with Rett Syndrome. We are driven by the most profound motivator — love for our children and an unwavering commitment to change their lives and the lives of all with Rett. Backing this up are decades of experience in each of our fields.

Our scientific staff are equally dedicated. They are driven by a passion for science and a zeal to translate that science into life-changing cures. Their knowledge, their integrity, and their combined experience of over 60 years in drug development and clinical trials, fuel their commitment to reaching our goal.