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Meet Max

Our Mr. Max was born on August 25, 2009. Besides a little morning sickness in the beginning, I ...Read More >

Meet Francesco

Appreciate the little moments in life. That’s what my almost three-year-old son has taught me. ...Read More >

Meet David

If you met David or indeed if you saw David perform you would be surprised to learn that David ...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, August 23rd, 2019 at 7:33am

Excellent article about the possible link between damage to the sodium channel gene and SUDEP. Perhaps a consideration for future HH research?!

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasFriday, August 23rd, 2019 at 5:07am

As an epilepsy disorder, HH is very often misdiagnosed or goes undiagnosed due to the unique presentation of gelastic or laughing seizures (https://bit.ly/2zAkPbU). If these gelastics occur during infancy the children are often diagnosed with colic and as the child grows doctors often...

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