The Myhre Syndrome Foundation’s 2025 Annual Report is now available. This year’s report highlights the progress we’ve made together, from advancing research and strengthening clinical partnerships to deepening support for families around the world. We are incredibly grateful to our community of donors, researchers, clinicians, and advocates who make this work possible. We invite you to read the full report and celebrate the impact we’re building - together. Find the report here.

Katie Rosen, a second-year genetic counseling student at MGH Institute of Health Professions, is looking to interview caretakers of people with Myhre syndrome or adults with Myhre syndrome for a research study. 

Participation consists of a 60-90 minute, audio-recorded interview about your/your child’s symptoms and treatments to learn how these impact you and your family. By sharing your story, you’ll help researchers determine what matters most to the Myhre syndrome community.

Together, with input from patients, caregivers and other healthcare providers, we hope to inform future clinical trial outcome measurements and improve health care management of individuals with rare, genetic neurological disorders.

If you are interested in participating, please fill out this survey!

We’re excited to share the first published study from the Myhre Syndrome Patient Registry—the largest collection of Myhre syndrome data ever gathered. Find the article here.