Hot Topics

Meet Elleanor

Meet Elleanor On June 11, 2012, we welcomed our first child, Elleanor, to the world. She was heal...Read More >

Epidiolex Approved by the FDA for Epilepsy

Monday, June 25th, U.S. Food & Drug Administration (FDA) approved EPIDIOLEX®(cannabidiol) oral...Read More >

Independence Day

The Fourth of July is always such a fun day of celebration in the US. It represents so much for ou...Read More >

Meet Elizabeth

  HH is for life. In 1957 my wife was born, it was a normal birth but within weeks it was c...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 HamartomasFriday, July 20th, 2018 at 5:51am

Please welcome Bradford Davis to the Hope For HH team. We are so excited to have him join as part of our Donor Database team. Find out about Bradford's HH connection and why he decided to become a volunteer.


Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasThursday, July 19th, 2018 at 3:14am

The impact on the family and in particular the siblings of those with a rare disease like hypothalamic hamartomas or other rare epilepsy syndromes can be significant.

"While most families with chronic health problems or disabilities struggle through times of fear...

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasWednesday, July 18th, 2018 at 4:09am

Find out more about this inspiring 6-year-old Elleanor and her journey with a hypothalamic hamartoma tumor. Elleanor is featured on today on Hope For HH's blog.

#hhfighter #hope
#epilepsy #gelastic...


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