We are delighted to share the latest Myhre Syndrome Patient Registry data, and we want to express our gratitude to the Scientific Committee for creating the report.

The report includes demographic information and symptom updates. It represents an incredible 22 countries and almost half of Myhre syndrome's reported population! But we’d love to get that number to 100%, so please let us know if you have questions or need help filling out the questionnaire.

Our Executive Director, Kate Wears was asked to write a first-person narrative with physician partners Dr. Angela Lin and Dr. Lois Starr. The narrative discusses our role as a non-profit and our big ambition.
Read it here.

Your, or your child’s, Myhre journey is incredibly important to us. Not only do we want you to get access to the best care but we also want to find treatments and a cure. Can you help us by sharing your data and story with us? Find out more here.

Congratulations to Angela Lin, MD, co-director of the Myhre Syndrome Clinic at MassGen in Boston, on publishing a new research paper, ‘Emergence of the natural history of Myhre syndrome: 47 patients evaluated in the Massachusetts General Hospital Myhre Syndrome Clinic (2016–2023).’ This in-depth paper details previously unreported findings from patients seen at the Myhre clinic.