Hot Topics

Updated HH MRI Protocol

Hypothalamic Hamartomas can be very difficult to diagnose for many reasons. Gelastic seizures may ...Read More >

DC Family Forum | Meet The Speakers

  MEET OUR DC FAMILY FORUM SPEAKERS - AMY KAO In this series, we will introduce you to the ...Read More >

Dr Rekate is Retiring

I have so many mixed feelings as I write this blog today! I get the chance to reflect a bit on the...Read More >

DC Family Forum | Meet The Speakers

  MEET OUR DC FAMILY FORUM SPEAKERS -  CARRIN BRANDT Please meet Carrin Brandt who is a ...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 HamartomasWednesday, September 27th, 2017 at 3:20am

HH Team at Barrow Neurological Institute (BNI) has developed an updated MRI protocol they recommend if an HH is suspected. Additional information is on our blog:
Barrow Neurological Institute

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasTuesday, September 26th, 2017 at 3:53am

Help raise awareness of Hypothalamic Hamartomas and support our Fall Fundraiser. This fundraiser will help support the upcoming 2017 Family Forum in Washington, D.C. Check out the new long sleeve shirts and hoodies. Just in time for the cool fall weather.

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasSaturday, September 23rd, 2017 at 3:24am

Have questions about alternative treatments for HH? Make sure you register for our Family Forum. Dr. Kao will be leading a roundtable discussion on HH& Alternative therapies including the ketogenic diet and Cannabidiol (CBD). Find out more about Dr.Kao here:


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