Giving Hope. GET INVOLVED DONATE Getting Answers. Hope for Hypothalamic Hamartomas (HopeForHH.org) provides information, support and community to HH patients, caregivers and healthcare providers. We promote research into early detection, improved treatments, living with HH as a complex medical syndrome, and a cure. Giving Hope. GET INVOLVED DONATE Getting Answers. Hope for Hypothalamic Hamartomas (HopeForHH.org) provides information, support and community to HH patients, caregivers and healthcare providers. We promote research into early detection, improved treatments, living with HH as a complex medical syndrome, and a cure.

In the News

Help Us Welcome Volunteer Michelle Swartz To Our Team!

As part of joining Hope For Hypothalamic Hamartomas team of volunteers I was asked to share m...Read More >

This Is My Why | Lisa Soeby

As we continue through International Hypothalamic Hamartoma Awareness month we are sharing the ...Read More >

This is My Why | Kathy Jensen

During our annual board training, each board member was asked to describe their 'Why'. Why do y...Read More >

Meet Lou

Meet Lou - A Story of Hope Lou’s story, like many others on this site, begins with a series...Read More >

This Is My Why | Kimberly Ranson

Our team recently participated in board training and a mid-year strategic planning session. Du...Read More >

For Families

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 HamartomasTuesday, February 23rd, 2021 at 7:46pm

We are currently at 46% of our goal for the #WeAreRare fundraiser and we need YOU, our Hope For HH community, to continue your efforts to raise funds to support our upcoming Patient Conference and our two HH Research Initiatives Please consider...

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasThursday, February 18th, 2021 at 8:05pm

We are the ultra-rare in the world's rare disease community. #HopeforHH #hypothalamichamartoma #brain #tumor #gelastic #epilepsy #syndrome

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