In the News

Welcome Volunteer Whitney Barnett To Our Team!

I’m a full-time nurse, wife, and a mother of two children...Reece who’s 10 and Nora, who’s 7. R...Read More >

Sleep Awareness Week

Sleep – it seems like we can never get enough of it! We invest in Fitbits and Apple Watches to ...Read More >

Rare Diseases and Employment Challenges

We are excited to bring you another in our series of blogs by our Intern Afsoon Movahed. Afsoon...Read More >

An Exciting New Approach to Genetic Diagnosis of Children with HH

HH and Genetics – Challenges and Opportunities Hypothalamic hamartomas (HH) have long been...Read More >

Challenges Of Having A Sibling With A Rare Disease

Hello Everyone, My name is Afsoon Movahed and I'm a Hope For HH intern and guest blogger. ...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 HamartomasThursday, April 2nd, 2020 at 3:19pm

A Time for Reflection - 10 years of Impact

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasWednesday, April 1st, 2020 at 4:12pm

We are growing and are excited to welcome Whitney to the Hope For HH team. Thank you Whitney for joining our mission to help all those living with HH!! Read more about Whitney's HH connection and why she decided to become a volunteer.


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