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Meet Amanda

“Amanda, it’s time to get your shot now! Go grab your Birthday Bear.” I was diagnosed 21 years ag...Read More >

Listen as Dr. Helen Cross describes findings from a recent study regarding cognitive and behavioral challenges in patients with HH.

Newly Diagnosed

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 HamartomasSaturday, March 23rd, 2019 at 2:30am

Big thank you to Shannon who celebrated her birthday by fundraising for Hope For HH. She raised over 230GBP that will help us to continue our mission to raise awareness and fund research, programs and services for those in the HH community.


Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasFriday, March 22nd, 2019 at 4:17am

Please take the time to watch this latest episode of Seizing Life It features Tom Stanton from The Danny Did Foundation. This organizations the mission is preventing deaths caused by seizures and driving research and education. Our HH community has lost several precious individuals to...

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasFriday, March 22nd, 2019 at 3:00am

Next Tuesday, March 26, is Purple Day around the world. Purple Day is an international awareness campaign for epilepsy awareness and education. Show your support by wearing purple and being on of the millions of epilepsy advocates. #EpilepsyAwareness.


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