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Listen as Dr. Helen Cross describes findings from a recent study regarding cognitive and behavioral challenges in patients with HH.
Newly Diagnosed
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.
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.
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.
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
The REN ( Rare Epilepsy Network ) was created in 2014 to expedite research into the rare epilepsies. It joined the forces of 30 rare epilepsy organizations with the Epilepsy Foundation of America, RTI International, and Columbia University in the City of New York. Currently,...
Wishing Wendi Tipps Happy Birthday. Thank you for all you do for the Hope For HH foundation and HH community. You inspire us all with your strength and passion. “The thing about being brave is it doesn't come with the absence of fear and hurt....
Our mission is to provide information and support to hypothalamic hamartoma patients, #caregivers, and healthcare providers and to promote #research toward early detection, improved #treatments, living with HH, and #cure. We couldn't accomplish these goals without the...
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