In the News
For Families
Getting a new diagnosis can be frightening and overwhelming. There is a whole new vocabulary you have never heard before, and not understanding it can mean confusion and further isolation. Start here to learn the basics and make informed decisions.
For Professionals
Correctly diagnosing a hypothalamic hamartoma (HH) can be challenging for even the most experienced professional. Start here to gain a better understanding of the comorbidities associated with a hypothalamic hamartoma and the appropriate diagnostic tools available to providers today.
For Donors
Your contributions are a critical part of our efforts to provide support to patients and families, educate medical professionals and therapists, and to encourage researchers to seek answers to this very complex condition. Start here to read more and support our on-going efforts.
1 in 200k diagnosed worldwide
Often goes undiagnosed or misdiagnosed for years
Seizures commonly unresponsive to medication
Can result in cognitive and behavioral deterioration, learning disabilities, endocrine dysfunction and sleep disturbances
We released the original English and Russian translations of the HH Comorbidity Survey last year and within a couple of months had over 200 respondents. Due to the interest by the international medical community, we took action to have the survey translated into French and...
Sharing your story about living with a hypothalamic hamartoma (HH) can help others living with this rare disease. You are not alone. There is a strength that comes with connecting with people who are experiencing the same issues (seizures, depression, anxiety, behavior, rages, memory, endocrine,...
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