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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
Please welcome Bradford Davis to the Hope For HH team. We are so excited to have him join as part of our Donor Database team. Find out about Bradford's HH connection and why he decided to become a volunteer. https://bit.ly/2uxm5vM
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The impact on the family and in particular the siblings of those with a rare disease like hypothalamic hamartomas or other rare epilepsy syndromes can be significant.
"While most families with chronic health problems or disabilities struggle through times of fear...
A sister's story of life with a sibling suffering with a hypothalamic hamartoma and it's associated epilepsy, cognitive and emotional impacts.
hopeforhh.org
Find out more about this inspiring 6-year-old Elleanor and her journey with a hypothalamic hamartoma tumor. https://bit.ly/2zOIASg Elleanor is featured on today on Hope For HH's blog.
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