In the News

Saving Joelle

Joelle Rue was born in April of 1994. During Joelle’s 4 month well baby check-up her doctor tol...Read More >

Meet Max

Our Mr. Max was born on August 25, 2009. Besides a little morning sickness in the beginning, I ...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, September 17th, 2019 at 11:26am

Hope For HH in the news! Thank you Mark and Ilene for sharing your HH story and continuing to raise awareness.
https://www.wusa9.com/article/news/local/maryland/marylandfamilybattleshh/65-51496794-028a-4883-9d32-b91ba111d7af

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasSunday, September 15th, 2019 at 11:47pm

Hope For HH board and Medical Advisory Board Member at the OrthoBethesda 5K. Raising #hope for our community! https://runsignup.com/Race/MD/Bethesda/OrthoBethesda5K

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