Hot Topics

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 >

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 HamartomasSaturday, September 22nd, 2018 at 2:45am

Final days to donate! Show your support of this extraordinary Hope For HH advocate and mom. Emma is running for her son, Charlie, and in honor of all those with HH. Race is on September 23rd, so donate today!

https://bit.ly/2xfN80a

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasFriday, September 21st, 2018 at 3:31am

Anniston is heading for treatment October 19th. Make sure to read her HH story on our blog today. https://bit.ly/2xsh4Gv

#raredisease #brain #tumor #epilepsy #seizures #hope

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasThursday, September 20th, 2018 at 2:27am

For many with a hypothalamic hamartoma there is a need to not only take medication for seizures, but for the many other comorbidities associated with this syndrome. The FDA recently launched a new Medication Guide database (https://bit.ly/2M9qi2R)

A medication guide...

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