In the News

Meet Faith

Faith’s Story My pregnancy with Faith was difficult, I developed a strange rash, which we never real...Read More >

NEW Book on Pediatric Epilepsy Surgery | By Hope For HH MAB Members

Congrats to Hope for HH Medical Advisory Board members Drs. J. Helen Cross & Alexis Arzimanoglou...Read More >

Meet Carrie

Carrie’s JourneyWe are excited to introduce Carrie - an adult with HH and the Director of our Hope f...Read More >

Rare Epilepsy Network (REN) | 70th American Epilepsy Society (AES) Annual Meeting

The Rare Epilepsy Network (REN) is a consortium of partners committed to conducting research to impr...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 HamartomasTuesday, February 28th, 2017 at 11:08am

Tomorrow is Rare Disease Day. Do you know what they consider rare? Did you know Hope For Hypothalamic Hamartomas #hypothalamichamartoma is one of 250 members of NORD? @NationalOrganizationforRareDisorders

NORD was founded on the principles of collaboration and a...

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasTuesday, February 28th, 2017 at 4:48am

How to Participate in the Tweetchat

Join the tweetchat by signing in to your active Twitter account. Enter into the tweetchat at 12:45 p.m. EST on Feb. 28 from the Twitter management tool that you prefer (such as tweetdeck.com or tweetchat.com). Join...

Raynauds Scleroderma Awareness- Global Patients awesome 🙂 https://sclerodermanews.com/2017/02/08/scleroderma-rare-disease-day-2017-research/
Robin Hoever Lennon Awesome.

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