In the News

Potential Cause of HH Discovered!

Researchers at Columbia University, University of Melbourne and the Barrow Neurological Institute re...Read More >

New Research Into the Cause of HH

Researchers at Columbia University, University of Melbourne and the Barrow Neurological Institute re...Read More >

Hope For HH UK | Meet the Team

Sue Jackson, Secretary UK, Wrexham Sue’s daughter Faith, was diagnosed during a routine 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 HamartomasSaturday, April 30th, 2016 at 1:16am

Counting Down the Days!!! Let's get Muddy!!!

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Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasTuesday, April 19th, 2016 at 1:14pm

Jason finished the Boston Marathon in 02:52:31 (06:35 min/mi)!!!! Finished 64th for his age group (40-44). We so appreciate his dedication to running to raise awareness of rare diseases like hypothalamic hamartomas. Thank you Jason.

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