Category

Homepage

FDA Grants Trofinetide Priority Review

Monday, September 12, 2022

ACADIA has shared the exciting news that the US Food and Drug Administration (FDA) has reviewed the documents received as part of the New Drug Application (NDA) for trofinetide, and they have determined that the application is complete and can be filed. They also determined that trofinetide qualifies for Priority Review. The Prescription Drug User … Read More

In-Person Strollathons Are Back!

Tuesday, July 26, 2022

In September IRSF returns with our in-person Strollathons! These nationwide fundraisers bring together local communities to go ALL IN for treatments and a cure for Rett syndrome. Since 2004, these family-friendly events powered by dedicated volunteers, sponsors, donors, and Rett families have raised more than $15M to advance IRSF’s mission to empower families and accelerate … Read More

IRSF Expands Center of Excellence Network

Wednesday, July 20, 2022

The International Rett Syndrome Foundation is expanding our community’s access to best-in-class care by adding four Rett syndrome clinics to our Center of Excellence network. This expansion helps to fulfill IRSF’s commitment that all families living with Rett syndrome in the U.S. have ready access to a Rett syndrome expert. “When we see care deserts, … Read More

Acadia Community Update on Trofinetide

Wednesday, July 20, 2022

July 18, 2022 Dear Rett Community, Acadia is pleased to announce the submission of a New Drug Application (NDA) to the U.S. Food and Drug Administration (FDA) for trofinetide for the treatment of Rett syndrome in adults and pediatric patients 2 years of age and older. The full text of the Acadia press release can … Read More

The Summit of Hope and Healing: ASCEND 2022 Rett Syndrome National Summit

Wednesday, June 8, 2022

By Katie Busch, IRSF Program Coordinator –  During the last week of April 2022, the International Rett Syndrome Foundation welcomed more than 500 members of the Rett community to the ASCEND 2022 Rett Syndrome National Summit. Held in Nashville, Tennessee, at the Gaylord Opryland Resort & Convention Center, the sold-out summit marked the first in-person … Read More