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Can You Spare 5 Minutes to Help Raise $1 Million for HH Research? August 16, 2013

Posted by mvarlan in Uncategorized.

Please read this important message from Ilene Miller, Co-Founder of HopeforHH.com:

As many of you know,  Hope for Hypothalamic Hamartomas (Hope for HH) has joined with the Epilepsy Foundation and other rare epilepsy organizations to apply for a million dollar ($1M) grant to create a rare epilepsy registry. This collaborative initiative has made it past the first round of the application process and we have been invited to submit a full application on September 27th. Our next step is to ask our patients to complete a brief 15 question survey which can be found here .

 This survey will take less than 5 minutes and asks some general questions about you (if you are the patient) or your patient’s epilepsy diagnosis.

 Responses from this survey will be used as part of the formal application to show there is a large population of patients impacted with rare epilepsies that want this grant application to be awarded. 

 Your personal information will be kept private and you are under no obligation to participate in the registry should you choose not to any step along the way. However, to show that the HH community fully endorses this grant application, we need everyone who has previously or currently endorses a rare epilepsy registry  to complete this survey ASAP.

 Please complete this survey TODAY! If you have any questions, please email: ilenepennmiller@gmail.com or lisasoeby@cox.net 


Maggie Bobrowitz, RN, MBA
Neuroscience Program Coordinator
Barrow Hypothalamic Hamartoma Center at Phoenix Children’s Hospital
Barrow Hypothalamic Hamartoma Center at St. Joseph’s Hospital & Medical Center



1. Ramiro Ortega - August 17, 2013

Donde encuentro la solicitud para llenarla

barrowhhprogram - August 19, 2013
mvarlan - August 19, 2013

Por favor, haga clic en la palabra “aquí” al final del primer párrafo.

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