Hot Topics
For Families
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 Families - We are proud to partner with the Child Neurology Foundation to conduct a brief survey concerning knowledge and communication about epilepsy between medical professionals and families. This survey has been developed to understand what families know about the effects of epilepsy and...
Web survey powered by SurveyMonkey.com. Create your own online survey now with SurveyMonkey's expert certified FREE templates.
surveymonkey.com
Great news - the Epilepsy Special Issue: Hypothalamic Hamartomas & Epilepsy has been made FREELY available to the public. BIG thanks to Dr. Jean Regis, head of Functional Neurosurgery and Radiosurgery @ hopital de la Timone (Marseille) Aix-Marseille University for leading the charge. As well...
Kathrin Wagner, Andreas Schulze-Bonhage, Horst Urbach, Michael Trippel, Timo S. Spehl, Franziska Buschmann, Birgitta Metternich, Isabell Ofer, Philipp T. Meyer and Lars Frings
onlinelibrary.wiley.com
The FUS webinar is at 8 PM EST tonight. Not too late to register here: https://register.gotowebinar.com/register/8129755274532065283?utm_source=07-25-2017%3ATune+in+Tonight+for+Webinar+on+HH+&utm_campaign=07-25-2017%3ATune+in+Tonight+for+Webinar+on+HH+&utm_medium=email
register.gotowebinar.com
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