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 Volunteers Mark & Kristy DeBowes!

We are Mark and Kristy, first time mom and dad to Brett, age 18 months.  We are relatively ne...Read More >

Meet Brett

Mark and I married 8 years ago, in our mid-thirties, and wanted nothing more than to be parents...Read More >

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 >

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 HamartomasMonday, August 2nd, 2021 at 8:12pm

Trauma for the Caregiver is REAL and only made more intense during a global event like a pandemic. Child Neurology Foundation has shared an incredibly helpful discussion on how we can all identify what we are feeling and begin to process the trauma. Definitely worth...

Hope for Hypothalamic Hamartomas
It’s not uncommon for parents and caregivers of children with neurologic conditions to experience PTSD. In this video, listen to a caregiver and a psychologi...
Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasMonday, August 2nd, 2021 at 4:24pm

Join the Hope For HH Newsletter (https://bit.ly/3c8JYig) to get the latest news on hypothalamic hamartoma research and treatments, be the first to learn about upcoming events, and learn how you can make a meaningful impact in the fight to find a cure...

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