Hot Topics

EpiCARE – Shared Expertise in Rare and Complex Epilepsies in the European Union

  On 16 March 2016 the EU launched its first call for interest from medical and research cen...Read More >

Hope For HH Turns 10!

This year Hope for HH is celebrating its 10th Anniversary! Over the next year, we look forward to ...Read More >

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 >

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 HamartomasWednesday, January 23rd, 2019 at 4:17am

Share your HH story and give hope to others in the HH Community. Email us at "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...

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasTuesday, January 22nd, 2019 at 2:28am

Today we remember and honor Dr. Martin Luther King Jr.'s legacy through service and volunteerism. Pledge to serve on MLK Day and all year long!
#MLKDay #volunteer #serve #hope

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasSaturday, January 19th, 2019 at 4:41am

Wishing a belated Happy Birthday to Jaci! Jaci thank you for sharing your last birthday with HOPE! We appreciate so much each and every fundraising event as they provide the funds necessary to continue our support, programs, and research initiatives! Thank you for sharing your...


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