Hot Topics

Meet Sofia

[see translation here] Hello, my name is Luis Paulo and I'm the father of the little Sofia. I'm w...Read More >

EpiCARE – Shared Expertise in Rare and Complex Epilepsies in the European Union

  On 16 March 2016 the EU launched its first call for interest from medical and research cen...Read More >

Hope For HH Turns 10!

This year Hope for HH is celebrating its 10th Anniversary! Over the next year, we look forward to ...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 HamartomasThursday, February 21st, 2019 at 4:00am

Are you a rare caregiver? Are you the advocate for someone with HH? "The friends and family who care for someone with a rare disease really become experts and the ‘voice of care’," said Nicole Boice, Founder and CEO of Global Genes http://bit.ly/2GReVGH

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasThursday, February 21st, 2019 at 2:26am

Check out the latest Seizing Life podcast with CURE Founder Susan Axelrod.

Hope for Hypothalamic Hamartomas
Seizing Life
“We're not angry, we are desperate.” CURE Founder Susan Axelrod speaks on the power of moms, her daughter’s battle for seizure control, and how she built CURE, the leading non-governmental supporter of epilepsy research: https://www.seizinglife.org/20-years-of-impact-from-the-kitchen-table-to-cutting-edge-research/
Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasWednesday, February 20th, 2019 at 5:30am

More #Hope Random Acts of Kindness have been received. We are so happy to give back to our amazing community as well as our many rare disease partners. Thank you to everyone that sent us a photo of their #Hope RAK....

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