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Meet Carson

Carson’s story Our story starts when I was 35 weeks pregnant with Carson. A routine ultrasound re...Read More >

SUDEP Awareness Series | SUDEP Research

SUDEP Awareness Series | Part 3 - SUDEP Research In Part 3 in our SUDEP blog series - SUDEP Re...Read More >

SUDEP Awareness Series | Talking about SUDEP with your doctors

    SUDEP Awareness Series | Part 2 - Talking about SUDEP with your doctors In Part 2 in our SUDE...Read More >

SUDEP Awareness Series | What is SUDEP?

  SUDEP Awareness Series | Part 1 - What is SUDEP? Hope for HH has been made aware of two y...Read More >

Meet Glen

I am Glen B Schallman , 59 yrs old was diagnosed back on March 1, 2002, by Dr. Rekate at the age of ...Read More >

Listen as Dr. Helen Cross describes findings from a recent study regarding cognitive and behavioral challenges in patients with HH.

Newly Diagnosed

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

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