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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
Have questions about alternative treatments for HH? Make sure you register for our Family Forum. Dr. Kao will be leading a roundtable discussion on HH& Alternative therapies including the ketogenic diet and Cannabidiol (CBD). Find out more about Dr.Kao here: http://bit.ly/2xo6MGl
Dr Hal Rekate, formerly at Barrow Neurological Institute (BNI) in Arizona and currently the Director of The Chiari Institute and a neurosurgeon at North Shore – LIJ’s Cushing Neuroscience Institute, will be retiring at the end of this year. Find out more about his retirement...
I have so many mixed feelings as I write this blog today! I get the chance to reflect a bit on the amazing life and career of an exceptionally gifted pediatric neurosurgeon, but I also am here to announce to our HH community that he...
hopeforhh.org
Carrin will be leading a roundtable discussion on HH & Family Dynamics. For more information about Carrin, check out our latest blog: http://bit.ly/2fh8CnE
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