Support the 2026 Hope for Hypothalamic Hamartomas (Hope for HH) Patient and Family Conference.

Hope for HH is gearing up for our 2026 Patient & Family Conference, and we’re inviting our amazing community — family, friends, and superstar supporters — to be part of making it happen!

If you’d like to help make this conference a success but don’t plan to attend as a patient or immediate family member, we would be incredibly grateful for your support through a donation. Your contribution helps us create a warm, welcoming space for connection, collaboration, and learning. Donations directly fund travel for leading HH experts from around the world, meals during conference events, logistics, technology, and all the behind-the-scenes details that make this meaningful gathering possible.

One of Hope for HH’s core missions is sharing accurate, up-to-date information about diagnosing, treating, and managing Hypothalamic Hamartoma Syndrome, along with the latest research and clinical advances. To support that mission, we host family conferences to bring together individuals living with HH and immediate family members, to learn, share experiences, and build meaningful relationships within this unique community. HH specialists join us to provide updates on treatments, research, and best practices, while families gain support from others who truly understand the journey.

Because HH is so rare, many families feel isolated and are spread across different states and countries. Hosting a conference creates an opportunity to connect with others who “get it.” Families travel from across the U.S. and internationally to attend, and for those who can’t make it to North Carolina this year, we’ll offer a virtual option so no one misses out.

Thank you for helping us Face the Future Together!

Hypothalamic Hamartomas (Hope for HH) is a volunteer-based nonprofit organization founded by parents of children with hypothalamic hamartomas (HH).

Our goal 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 heart-breaking 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.

2026 Patient and Family Conference Fundraiser

Hope for HH 2026 Patient and Family Conference - Facing the Future Together