International Rett Syndrome Foundation
@Rettsyndrome
Accelerating full spectrum research to treat and cure Rett syndrome while empowering families with information, knowledge, and connectivity.
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https://rettsyndrome.org 16-12-2009 21:50:05
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Thank you to Anovo, Anavex Life Sciences, and DepYmed, the bronze sponsors of this year's ASCEND 2024 Rett Syndrome National Summit! Time is running out to register - reserve your spot today at rettsyndrome.org/ascend.
Today, Acadia Pharmaceuticals announced that their New Drug Submission (NDS) for trofinetide has been accepted and granted priority review by Health Canada for the treatment of Rett syndrome. Read the full press release here: ir.acadia.com/news-releases/…
#WorldOrphanUSA is just 4 days away! ⏳
Learn about the impact of AI & Digital Health in the #raredisease space with our panel: 'Revolutionizing support: MyMejo's innovative solutions for caregivers by caregivers', with MyMejo & International Rett Syndrome Foundation.
Register: tinyurl.com/ytf27dud
During ASCEND 2024, many of the medical directors from the 18 clinics designated as IRSF Centers of Excellence for #Rettsyndrome care will be presenting on the care topics most important to you and your family. Learn more about these speakers and more: rettsyndrome.org/ascend
In our latest blog post, we interviewed communication expert Dr. Theresa Bartolotta to learn how she is leading the charge in communication strategies for #Rettsyndrome patients like her daughter, Lisa. Read the blog here: rettsyndrome.org/comms-spotligh…
DepYmed recently received clearance from the U.S. FDA to initiate a Phase 1 clinical trial of their drug candidate DPM-1003 for the treatment of Rett syndrome! For more info on DepYmed, all the companies advancing #Rettsyndrome treatments, & their status: buff.ly/3vrZWC7
We are excited to announce that the LOI submission window for this year's IRSF #Rettsyndrome research funding cycle will open on April 15th! The award will fund projects up to $300k for 2 years. More info here: rettsyndrome.org/research/for-r…