Hot Topics

AAN & AES endorse a New Clinical Guideline on SUDEP

AAN & AES endorse a New Clinical Guideline on SUDEP The American Academy of Neurology and the...Read More >

Meet Gavin

Gavin’s Story Gavin was born on time and had a normal delivery. From the time he was about two we...Read More >

Exciting Research Grant Update | Dr. Varina Boerwinkle

Hope for HH is excited to update everyone on the work Dr. Varina Boerwinkle, from Texas Children’s...Read More >

Research Grants | Dr. Karen Wilcox & Dr. Peter West

If We Can Create an Animal Model for HH We Will Significantly Improve Our Understanding of the Con...Read More >

Welcome our New Medical Advisory Board Members

  Hope for Hypothalamic Hamartomas recently welcomed 5 new advisors to our Medical Advisor B...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 HamartomasWednesday, June 28th, 2017 at 5:21pm

Save the date for another great program from hope for HH and our friends at Epilepsy Foundation of America https://www.epilepsy.com/article/2017/6/webinar-focused-ultrasound-and-potential-new-technologies-difficult-control-seizures

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasThursday, June 1st, 2017 at 6:57am

For those families following efficacy of CBD discussions, this report concerning a trial of CBD in Dravet Syndrome (another rare epilepsy) may be of interest. http://www.nejm.org/doi/full/10.1056/NEJMoa1611618

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasTuesday, May 16th, 2017 at 7:23am

We have lost several HH patients to SUDEP and strongly endorse more research to understand what causes it and identify strategies to prevent it.
http://www.hopeforhh.org/blog/aan-aes-endorse-a-new-clinical-guideline-on-sudep/

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