WE DID IT! Thanks to your efforts, 18 U.S. Representatives signed on to support listing Rett syndrome as a topic eligible for next year's Department of Defense research funding, almost double the number from FY24! Letter and rep list at rettsyndrome.org/advocacy.

Yesterday, Neurotech International reported positive results from their ongoing Phase I/II clinical trial in Australia of NTI164, a broad-spectrum cannabinoid drug therapy for the treatment of Rett syndrome. More results: investi.com.au/api/announceme…

Earn up to 5.75 CME credits by participating in new #RettSyndrome multidisciplinary care sessions on Medlive! Hear from David Lieberman, MD, PhD of [tag Boston Children’s Hospital], Henry Hasson, MD and IRSF's Carmen Luna, MPH: bit.ly/4bf3l6y

The meeting agenda and speaker list for the 2024 IRSF Rett Syndrome Scientific Meeting is now live on our website! View the agenda, learn more and register today: rettsyndrome.org/ascend/2024sci…

We're excited to announce a transformative feature to the My Rett Ally app: Custom Journals! This new feature is designed to make caregiving simpler & more personalized, ensuring every detail in your 'moments of care' is handled with precision. Learn more: rettsyndrome.org/myrettally

WE NEED YOUR HELP! We need as many supporters as possible to contact their Members of Congress TODAY and urge them to list Rett syndrome as a topic eligible for federal research funding. Take action with our easy-to-use Advocacy Tool at rettsyndrome.org/advocacy!

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

Attention Researchers! We are now accepting applications for funding through the IRSF Rett Syndrome Innovation Awards. More information about this and other funding opportunities can be found here: rettsyndrome.org/research/for-r…

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…

There are so many things you can do with our My Rett Ally web app, powered by mejo! Get to know My Rett Ally, made exclusively for our Rett syndrome community, at rettsyndrome.org/myrettally.

With less than 3 months to go until ASCEND 2024 in Colorado, we are excited to announce some of the exciting speakers confirmed for this year's Family Conference! Learn more about these speakers and more at buff.ly/3xbBF3t.

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…

In this blog, IRSF’s Government Relations Manager, Katie Busch, shares more about her week on Capitol Hill for Rare Disease Week. Learn about our efforts and how you can join us in advocating for someone you love with Rett here: rettsyndrome.org/rdw2024.