In the News

An Exciting New Approach to Genetic Diagnosis of Children with HH

HH and Genetics – Challenges and Opportunities Hypothalamic hamartomas (HH) have long been...Read More >

Challenges Of Having A Sibling With A Rare Disease

Hello Everyone, My name is Afsoon Movahed and I'm a Hope For HH intern and guest blogger. ...Read More >

Pituitary Awareness Month

Pituitary Awareness Month - Adrenal Insufficiency October is Pituitary Awareness Month – and yo...Read More >

Saving Joelle

Joelle Rue was born in April of 1994. During Joelle’s 4 month well baby check-up her doctor tol...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 HamartomasWednesday, February 19th, 2020 at 2:17am

Congratulations to Professor J Helen Cross on her nomination for ILAE - International League Against Epilepsy President, 2021-2025 term. Professor Cross is the Chair of the Hope For HH Medical Advisory Board and a passionate advocate for those with hypothalamic hamartomas.

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Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasTuesday, February 18th, 2020 at 4:09pm

Are you a rare caregiver? Are you an advocate for someone with a hypothalamic hamartoma (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...

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