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Launched New Content | Treatment Facilities

  Launched New Content | Treatment Facilities Hope for HH has recently updated our treatment fac...Read More >

Meet Carson

Carson’s story Our story starts when I was 35 weeks pregnant with Carson. A routine ultrasound re...Read More >

SUDEP Awareness Series | SUDEP Research

SUDEP Awareness Series | Part 3 - SUDEP Research In Part 3 in our SUDEP blog series - SUDEP Re...Read More >

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.

 

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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, May 22nd, 2018 at 2:08am

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,...

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasSunday, May 20th, 2018 at 3:06am

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....

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasSaturday, May 19th, 2018 at 5:35am

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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