In the News

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 >

Facebook Live Q&A: When Laughing or Crying is a Seizure - Hypothalamic Hamartoma

 Community CornerJoin the Epilepsy Foundation and Hope for Hypothalamic Hamartomas on March 6 a...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 HamartomasMonday, April 24th, 2017 at 6:22am

Did you know Hope For HH is on Instagram? Make sure to follow us!
https://www.instagram.com/hopeforhh/

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasSaturday, April 22nd, 2017 at 5:26am

Several folks have asked how they can get more information about the Focused Ultrasound trials for HH. There have been many news articles these last few days about this possible new treatment. Please contact:

Stacy Thompson at UVA for a trial...

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasSaturday, April 22nd, 2017 at 2:20am

Studies are on-going to test the efficacy of cannabidiol, or CBD, in syndromes similar to HH. Read more on our latest blog.

http://www.hopeforhh.org/blog/cannabidiol-cbd-and-hh/

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