Hot Topics

What Is That Seizure Called Now?

Diagnosing and classifying seizures recently became easier and more precise. The International Lea...Read More >

Meet Abby

Our daughter’s name is Abigail “Abby” Joyce Smith, she is 12 years old now, born December 2005. In u...Read More >

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 >

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 HamartomasSaturday, August 11th, 2018 at 2:41am

What is a hypothalamic hamartoma (HH) and why is the #epilepsy associated with it so difficult to diagnose? What are the other symptoms of this condition?
More info:
#EpilepsyAwareness #RareEpilepsy

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasThursday, August 9th, 2018 at 4:14am

In a new Hallway Conversation, Dr. Joseph Sirven, editor-in-chief of, talks with Dr. Eric Kossoff, ketogenic diet editor, about the updated guidelines on the use of ketogenic diet therapies in children with epilepsy. Another great update from Epilepsy Foundation of America

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasWednesday, August 8th, 2018 at 8:59am

"Stories can be very healing and many people benefit from getting the opportunity to pass on their wisdom to others. This can be especially powerful for people who do not always feel that they have the chance to help others. Resilience is strengthened by recognizing...


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