Giving Hope. GET INVOLVED DONATE Getting Answers. Hope for Hypothalamic Hamartomas (HopeForHH.org) provides information, support and community to HH patients, caregivers and healthcare providers. We promote research into early detection, improved treatments, living with HH as a complex medical syndrome, and a cure. Giving Hope. GET INVOLVED DONATE Getting Answers. Hope for Hypothalamic Hamartomas (HopeForHH.org) provides information, support and community to HH patients, caregivers and healthcare providers. We promote research into early detection, improved treatments, living with HH as a complex medical syndrome, and a cure.

In the News

A Story of Kindness | Sierra

My name is Sierra Crislip. I’m an hypothalamic hamartoma (HH) survivor. Although my HH was ...Read More >

Hypothalamic Hamartomas - Top Cognitive Issues

HH Comorbidity Survey - Initial Results Neurological issues associated with hypothalamic ham...Read More >

Diagnostic Tools - Path to Proper Diagnosis of Hypothalamic Hamartoma

There are many tools a physician can use to diagnose a patient with epilepsy. With all these op...Read More >

Hypothalamic Hamartomas – Surgical Treatment Spectrum

HH Comorbidity Survey – Initial Results In today’s blog on the initial HH Comorbidity Survey...Read More >

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 >

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 HamartomasSaturday, July 18th, 2020 at 12:56am

Mark your calendar for this important discussion on telehealth from our partners Dee-p Connections.

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasFriday, July 17th, 2020 at 6:14pm

Our friends at @TheBrainRecoveryProject are awarding grants up to $500 in financial assistance for 40 qualifying U.S. families in our pediatric epilepsy surgery community. These funds can be used to assist with continuity of education, medical care, and basic needs. Check out link...

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