Hope for Hypothalamic Hamartomas (Hope for HH) is a volunteer-based nonprofit organization founded in 2009 by parents of children with Hypothalamic Hamartoma Syndrome (HH).

Join us as we celebrate the past 16 years of the relentless dedication and passion of our co-founders, board members and group of volunteers to improve the lives of those with Hypothalamic Hamartoma Syndrome. Our team continues to be driven by the Hope for the HH community we serve and the knowledge that the research we fund will continue to improve diagnosis, treatment, and one day, possibly, a cure for those living with this rare and complex syndrome.

We cannot continue to fund much-needed research and our upcoming 2026 Patient and Caregiver Conference without your commitment. Please consider making an impact on the lives of those with HH by making a tax-deductible donation today.

Hope for HH Mission:

Our mission is to create a single, credible source for information about the diagnosis, treatment, and support of individuals with HH. Every family touched by this rare disorder has a unique and often heartbreaking story of how they attained a correct diagnosis. Obtaining a correct diagnosis can take months and even years, and often involves incorrect diagnoses. Once a diagnosis is confirmed, many families struggle with choosing an appropriate course of treatment, if one is even available. Regardless of treatment, managing the daily lives of HH patients and dealing with the long-term and frequently devastating effects of HH requires ongoing information and support.

Learn more about our mission, our founders, and the programs that are made possible through the generosity of our volunteers, community, and donors.

2025 International Hypothalamic Hamartoma Syndrome Awareness

Education, Research and Support

Team Members