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 HamartomasThursday, November 15th, 2018 at 4:07am

The holidays are approaching and you will be busy shopping for gifts, decorations, and more. Don't forget to use and automatically raise donations for Hope for Hypothalamic Hamartomas. Shop for HOPE at

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasThursday, November 15th, 2018 at 3:31am

So excited for Ilene Penn Miller, Hope For HH Co-Founder, for being a finalist for the 2018 Heroines of Washington hosted by the March Of Dimes. Tonight each of the finalists will be honored and the winner announced. We're all cheering you on Ilene!!

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasWednesday, November 14th, 2018 at 4:28am

We are 1 in 3. For those with hypothalamic hamartomas and it's associated #gelastic #seizures it is a daily struggle to find a combination of medications and surgical treatment to reduce seizure activity. These seizures are generally resistant to medication. At...


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