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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
Our condolences are with the Lamp family on the passing of their daughter, Victoria. We are honored to be able to share Victoria's life story with the Hope For HH community. She was a remarkable woman, remembered for her zest for life and never settling....
Victoria Louise Lamp passed away unexpectedly of November 25, 2017 due to complications of SUDEP (Sudden Unexpected Death due to Epilepsy). Victoria had 2 surgeries to remove her hypothalamic hamartoma, however she continued to seizures at night. Victoria graduated from Ferris High School in 2004,...
hopeforhh.org
CURE: Citizens United for Research in Epilepsy is hosting a webinar today at 1pmMDT. 'Promising Anti-Epileptic Drugs in Development'
Although there are over 20 medications already available to treat seizures and epilepsy, there are still a great number of patients who could...
register.gotowebinar.com
Today we continue our SUDEP Awareness blog series with guidance on how to start the conversation with your doctors and what questions you should be asking in regards to your SUDEP risks. Read more here: https://bit.ly/2EWK4qT
PAME Conference
Epilepsy Foundation of...
SUDEP Awareness Series | Part 2 – Talking about SUDEP with your doctors In Part 2 in our SUDEP blog series – Talking about SUDEP with your doctors, we’ll provide information and guidance on how to begin the SUDEP conversation with your doctors. What Is...
hopeforhh.org
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