In the News

Finding Me - CJ Soeby

We are so excited to have CJ Soeby as today's guest blogger! CJ is truly an amazing young man ...Read More >

Hypothalamic Hamartomas - Top Endocrine Conditions and Symptoms

HH Comorbidity Survey - Initial Results Today we continue our blog series discussing the ini...Read More >

Hypothalamic Hamartomas - Psychiatric Behaviors, Conditions, and Personality Characteristics

HH Comorbidity Survey - Initial Results In 2019, Hope for HH launched a comprehensive HH Com...Read More >

Meet Madeleine

Madeleine was born on September 5th, 2004. Everything appeared normal until some unusual sympto...Read More >

Welcome Volunteer Cindy Rubash To Our Team!

My name is Cindy Rubash and I am a volunteer with Hope for HH.  I was asked to explain why...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 HamartomasMonday, June 1st, 2020 at 5:10pm

Join the conversation about the challenges and joys of DEE (Developmental Epileptic Encephalopathy) sibling relationships. Thank you to our partners DEE-P Connections and CURE: Citizens United for Research in Epilepsy for hosting this event.

Epileptic encephalopathies refer to a group of disorders...

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasFriday, May 29th, 2020 at 5:44pm

Farhana was only eight months old when she was diagnosed with a rare brain tumor known as a hypothalamic hamartoma.

https://www.luriechildrens.org/en/blog/brain-surgery-technique-zaps-farhanas-seizures/

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