In the News
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.
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
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.
...
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...
STAY INFORMED.
Important Research and Foundation news straight to your inbox
To stay abreast of current HH news & information, simply click "Sign Up" and complete the information on the sign up form.