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 HamartomasMonday, July 6th, 2020 at 11:36am

We released the original English and Russian translations of the HH Comorbidity Survey last year and within a couple of months had over 200 respondents. Due to the interest by the international medical community, we took action to have the survey translated into French and...

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasThursday, July 2nd, 2020 at 2:59pm

Sharing your story about living with a hypothalamic hamartoma (HH) can help others living with this rare disease. You are not alone. There is a strength that comes with connecting with people who are experiencing the same issues (seizures, depression, anxiety, behavior, rages, memory, endocrine,...

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