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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 >

10 Reasons to Enroll in Rare Epilepsy Network (REN) Study

Hope for HH participates in key epilepsy wide initiatives including the Rare Epilepsy Network ...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

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasFriday, April 20th, 2018 at 3:38am

Our condolences are with the Lamp family on the passing of their daughter, Victoria. We are honored to be able to share Victoria's life story with the Hope For HH community. She was a remarkable woman, remembered for her zest for life and never settling....

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasThursday, April 19th, 2018 at 6:08am

CURE: Citizens United for Research in Epilepsy is hosting a webinar today at 1pmMDT. 'Promising Anti-Epileptic Drugs in Development'

Although there are over 20 medications already available to treat seizures and epilepsy, there are still a great number of patients who could...

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasThursday, April 19th, 2018 at 4:51am

Today we continue our SUDEP Awareness blog series with guidance on how to start the conversation with your doctors and what questions you should be asking in regards to your SUDEP risks. Read more here: https://bit.ly/2EWK4qT
PAME Conference
Epilepsy Foundation of...

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