Hot Topics

Laser Ablation for HH Coming to Europe!

Medtronic recently announced they received clearance via the CE (Conformite Europeenne) Mark to la...Read More >

What Is That Seizure Called Now?

Diagnosing and classifying seizures recently became easier and more precise. The International Lea...Read More >

Meet Abby

Our daughter’s name is Abigail “Abby” Joyce Smith, she is 12 years old now, born December 2005. In u...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 HamartomasTuesday, September 18th, 2018 at 3:47am

Excited to announce our very own Ilene Miller has been selected as a Maryland-National Capital Area Chapter March of Dimes Heroines of Washington finalist. Ilene is a co-founder and the current Hope For HH President. She's being recognized for going above and beyond their professional...

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasMonday, September 17th, 2018 at 11:38am

On September 23, Hope For HH Co-Founder, Emma Nott, will be running in the Simplyhealth Great Bristol Half Marathon. Emma is hoping to raise awareness and donations for the Hope For HH foundation in honor of her son, Charlie, who lives with HH. Let's show...

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasSaturday, September 15th, 2018 at 6:07am

"In a recent study of children and adolescents age 10 to 19 years who had epilepsy, the most commonly observed comorbid psychiatric disorders were attention-deficit/hyperactivity disorder (ADHD) and anxiety, and 26.8% of those with a psychiatric diagnosis demonstrated executive dysfunction. Independent risk factors for this...


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