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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
As our HH community continues to ask questions regarding SUDEP awareness, risks and current research, we focused our next blog on the topic of Talking About SUDEP with Your Doctors.
We are re-sharing this important SUDEP Awareness blog series, in honor...
Hearing those words 'a rare brain tumor, a hypothalamic hamartoma' for the first time is devastating and overwhelming. Each of us as an individual with HH, a parent, caregiver, spouse, or friend of someone with HH knows that this HH journey is not linear, but...
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
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