In the News

Why Do The Comorbidity Survey?

We are only a week into the HH Comorbidity Survey and the participation has been amazing! We ho...Read More >

Neurological Comorbidities

Neurological Comorbidities and Hypothalamic Hamartomas (HH) Probably the most studied co...Read More >

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.

 

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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.

 

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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.

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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

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasTuesday, July 16th, 2019 at 4:36am

The goal of this survey is to provide medical professionals and researchers information about HH that they may not already know! We want to uncover the undiagnosed or under-diagnosed issues individuals with HH and their families are struggling with every day. Our end goal is...

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasSaturday, July 13th, 2019 at 5:46am

Whether you are an adult or child, had an open surgical procedure or laser ablation, seizure free or still living with daily seizures we want to hear from you! Take the HH Survey - voice your top concerns. What keeps you up at night? We...

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