Hot Topics

Meet Charlotte (Charli)

Echoing so many of your stories of HH (hypothalamic hamartoma) discovery, Charlotte was born on th...Read More >

Meet Layla

Layla is our sweet Valentine baby, born February 14, 2014. She arrived 10 days past her due date i...Read More >

Meet Anniston

Josh and I found out we were pregnant with Anniston on our one year engagement anniversary (about 2 ...Read More >

Laser Ablation for HH Coming to Europe!

Medtronic recently announced they received clearance via the CE (Conformite Europeenne) Mark to la...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 HamartomasWednesday, October 17th, 2018 at 5:09am

"Stories can be very healing and many people benefit from getting the opportunity to pass on their wisdom to others. This can be especially powerful for people who do not always feel that they have the chance to help others. Resilience is strengthened by recognizing...

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasWednesday, October 17th, 2018 at 3:06am

Celebrate with HOPE! Do you have a birthday or anniversary this month? Consider celebrating by hosting a Facebook fundraiser on behalf of the Hope For HH foundation. It's as easy as 1, 2, 3. http://bit.ly/2EZCkF5 Donations help us continue our programs in patient...

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasThursday, October 11th, 2018 at 4:35am

Meet Charlotte a beautiful 14-year-old girl that is enduring her HH challenges with the support of her doctors, her teachers and her friends and of course the love of her family. Read her story: https://bit.ly/2yrDW8N

#brain

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