Hot Topics

Meet Kate

When Kate was born in August of 2014, in Fargo, ND, the nurses immediately commented on how ‘vocal...Read More >

Weird Girl with A Tumor | Personal HH Journey eBook available on Amazon

Hope for HH is excited to introduce our community’s most recent published author – Sierra Crislip!...Read More >

EPILEPSIA Publishes Article by Hope for HH Research Grantee Dr. Varina L. Boerwinkle

  We are excited and proud to share that Epilepsia, the Official Journal of the Internationa...Read More >

Meet Charlotte (Charli)

Echoing so many of your stories of HH (hypothalamic hamartoma) discovery, Charlotte was born on th...Read More >

Meet Layla

Layla is our sweet Valentine baby, born February 14, 2014. She arrived 10 days past her due date i...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, December 14th, 2018 at 5:08am

Wishing Diane West a very Happy Birthday!!! Hope For HH is so grateful for Diane's dedication as one of the many volunteers working in the background. Have a fabulous day Diane!!

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasThursday, December 13th, 2018 at 4:54am

2017 Family Forum filled with HOPE, FAITH and COURAGE from all the families and professionals at the event.

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasSunday, December 9th, 2018 at 11:23am

Incredible artwork on display at AES2018 from Community Canvas! Do you know an artist who just happens to have epilepsy? Share their/your work with us here! ❤️💜


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