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Launched New Content | Treatment Facilities

  Launched New Content | Treatment Facilities Hope for HH has recently updated our treatment fac...Read More >

Meet Carson

Carson’s story Our story starts when I was 35 weeks pregnant with Carson. A routine ultrasound re...Read More >

SUDEP Awareness Series | SUDEP Research

SUDEP Awareness Series | Part 3 - SUDEP Research In Part 3 in our SUDEP blog series - SUDEP Re...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, May 25th, 2018 at 3:56am

Did you know Epilepsy Foundation of America has an entire program (The Wellness Institute) focused on recognizing the importance of a holistic approach to health (healthy eating, fitness and exercise, art therapy, and emotional health) for persons dealing with seizures and epilepsy?

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasWednesday, May 23rd, 2018 at 10:00pm

Happy birthday wishes to Carrie Fulcher! She inspires us with her strength, courage and her ability to bring hope to others. “I believe in being strong when everything seems to be going wrong. I believe that happy girls are the prettiest girls. I believe that...

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasWednesday, May 23rd, 2018 at 4:51am

Child Neurology Foundation has a new Caregiver Perspectives on Transitions Project and is interested in your experiences with different aspects of the transition to adulthood for children/young adults living with complex neurologic conditions.

Through online focus groups and surveys, we will explore...


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