Hot Topics

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.

 

Learn More

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.

 

Learn More

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.

Learn More

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, 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: http://bit.ly/2xo6MGl

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasThursday, September 21st, 2017 at 6:08am

Dr Hal Rekate, formerly at Barrow Neurological Institute (BNI) in Arizona and currently the Director of The Chiari Institute and a neurosurgeon at North Shore – LIJ’s Cushing Neuroscience Institute, will be retiring at the end of this year. Find out more about his retirement...

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasWednesday, September 20th, 2017 at 2:36am

Carrin will be leading a roundtable discussion on HH & Family Dynamics. For more information about Carrin, check out our latest blog: http://bit.ly/2fh8CnE

STAY INFORMED.

Important Research and Foundation news straight to your inbox.

 

To stay abreast of current HH news & information, simply click "Sign Up" and complete the information on the sign up form.

 

SIGN UP