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

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 Louā€™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 >

A Story of Kindness | Sierra

My name is Sierra Crislip. Iā€™m an hypothalamic hamartoma (HH) survivor. Although my HH was ...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 HamartomasFriday, November 20th, 2020 at 7:27pm

So proud of this HH warrior! šŸ’œ ChuChu is 6 years post brain surgery and continues to fight. ChuChu and his family are fierce supporters of Hope For HH and are always helping with our mission for #HHawareness. Thank you ChuChu for...

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasThursday, November 19th, 2020 at 9:11pm

This month we celebrate 11 years of serving individuals and families in the HH community. We want to THANK YOU! We are grateful for the support of the patients, caregivers, volunteers, board members and members of our medical advisory board. The organization was founded by...

Hope for Hypothalamic Hamartomas

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