In the News

Update on JoJo

We first introduced JoJo after his surgeries in 2011 when he was 19 months old.  He had a ...Read More >

Meet Aiden

As soon as Aiden was born he started having what we called at that time “tiny panic attacks” wh...Read More >

Comorbidities and HH

So just what is a comorbidity and why is it important to an individual with a hypothalamic hama...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, April 20th, 2019 at 6:26am

Unmasking Brain Injury is a global project designed to allow individuals living with a brain injury to create a mask that depicts the hidden feelings behind their brain injury. The goal is to raise awareness in our communities and give survivors a voice. What would...

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasSaturday, April 20th, 2019 at 6:03am

HH, Dravet, LGS...all severe early-life epilepsies that affect caregivers in profound ways. If you know someone that is caring for a loved one with epilepsy - why not do something special for them today. It is appreciated more than you will ever know. 💜


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