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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
HH Team at Barrow Neurological Institute (BNI) has developed an updated MRI protocol they recommend if an HH is suspected. Additional information is on our blog: http://bit.ly/2xz05kP
Barrow Neurological Institute
Help raise awareness of Hypothalamic Hamartomas and support our Fall Fundraiser. This fundraiser will help support the upcoming 2017 Family Forum in Washington, D.C. Check out the new long sleeve shirts and hoodies. Just in time for the cool fall weather. http://bit.ly/2fLGXs7
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
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