eNewsletter
Issue 8, June 2022
Epilepsy Awareness Day at Disneyland
Epilepsy Alliance America is excited to add Sofie's Journey, the organization behind Epilepsy Awareness Day at Disneyland, to our network of dedicated providers serving people with epilepsy and their families. Epilespy Alliance America and many of our member organizations will be attending the October 31-November 2 event at Disneyland this year. This is the largest gathering of the epilepsy community in the world - join us!
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Support Groups
Epilepsy is a hidden disorder. Despite how common it is, fear and stigma exist. It’s easy to feel isolated and alone. Members of support groups share experience, engage in advocacy, provide information and help each other. Several of our member organizations have support groups available.
Please check the options for the organization closest to you.
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Patient Advocate: Michael Rosado
Michael Rosado Perez shares his story as a Patient Advocate. Today, he is seizure-free and is the first patient to serve as the president of the Puerto Rico Epilepsy Society. He dedicates his efforts trying to provide others diagnosed with epilepsy with all the assistance, services and treatment available.
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Surveys for Patients and Healthcare Professionals
The EPSET study is inviting the following groups to share their views:
People aged 18 or above with epilepsy and their representatives; healthcare professionals; and researchers working in epilepsy clinical trials. You will be asked to share your opinion on which outcomes are the most important to measure and should be included in the core outcome set.
Physician Needs Assessment for the American Epilepsy Society
Are you a healthcare professional that has provided care or resources to people with epilepsy? If so, please consider taking this important survey that will help researchers from the American Epilepsy Society and the Dartmouth-Hitchcock Medical Center to better understand the gaps in knowledge and practice that many health professionals experience in caring for people with epilepsy. Survey results will be used to develop critical educational content for these communities of providers.
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Spread the word about our tools and resources:
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Seizure Recognition and First Aid Training - Your Way
Learn more about Seizure Recognition and First Aid Training - available in-person and virtually by our member organizations - and On Demand - 24/7 on our website.
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S.T.E.P.S Discussion Guide
With the right S.T.E.P.S. you can have stronger conversations with your healhcare provider and work together to reach your goals. Download the S.T.E.P.S Discussion Guide.
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Seizure Action Plans
A seizure is a medical emergency. A Seizure Action Plan lets others know what to do in an emergency situation.
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