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Hope for HH

ope for 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.
About Us
Contact Information
Hope for Hypothalamic Hamartomas PO Box 941 Eagle, ID 83616
Conditions We Support

Central Nervous System

  • Childhood Epilepsy

If you've been diagnosed with any of these conditions, we're here to help.

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Link to this page on PatientGroups.ai