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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
Final days to donate! Show your support of this extraordinary Hope For HH advocate and mom. Emma is running for her son, Charlie, and in honor of all those with HH. Race is on September 23rd, so donate today!
Anniston is heading for treatment October 19th. Make sure to read her HH story on our blog today. https://bit.ly/2xsh4Gv
For many with a hypothalamic hamartoma there is a need to not only take medication for seizures, but for the many other comorbidities associated with this syndrome. The FDA recently launched a new Medication Guide database (https://bit.ly/2M9qi2R)
A medication guide...
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