HESA NEWS

HESA NEWS

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Susan, Maddy and others discuss their journeys to diagnosis.

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In the 10 years HESA has been in existence, we have published two books,

hosted symposiums, held many webinars and supported so many. One thing we haven't done is fundraising. But now is the time! We want to begin funding our long term goals of research, more education and even more support. 

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Susan Foley, HESA Executive Director, interviews AE patients about their diagnostic journeys and the struggles that come about along the way.

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An virtual symposium for medical professionals who speak about the importance of crossing the aisle and using a necessary multidisciplinary approach among medical professionals.

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ASK ME ABOUT HE CAMPAIGN 2021

with HESA and AE ALLIANCE

#AskMeAboutHE

HESA and AE Alliance are raising awareness of autoimmune encephalitis together with our communities by posting pics with the most common ways they are affected by AE.

Patients, caregivers, friends...all welcome!

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A virtual event for patients, caregivers and physicians to support our community, educate and promote awareness of various forms of encephalitis.

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MADDY BOEHME'S JOURNEY WITH AUTOIMMUNE 

ENCEPHALITIS with Quest Diagnostics

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Global Genes connects, empowers and inspires the rare disease community.

The organization’s strategy:

"We spread awareness through our website, social media, Facebook support groups, published books, and encephalitis conferences and symposiums. We join forces with other AE non-profits to give us more power to help people with autoimmune encephalopathy. If we cannot help someone, we try to find another group that can."

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A discussion with Maddy Boehme and Dr. Robert Weir of UT Southwestern. 

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A first of its kind event for patients and caregivers

with multiple encephalitis organizations working together

to bring support and education to the

encephalitis community.

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“The AE Alliance is proud of the long-standing relationship with the Hashimoto’s Encephalopathy SREAT Alliance. We are grateful beyond words for HESA’s generosity. This collaboration allows both groups to look anew at imaginative ways to raise awareness on all autoimmune encephalitis fronts, fight this disease, and lessen the suffering of patients and their families,” said John Spencer, Executive Director of the AE Alliance.
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In this book, readers will learn the symptoms, diagnostic criteria and challenges, and treatment options for HE, as well as the scientific theories regarding the causes and diagnostic markers of the disease. Throughout the book the reader will find citations and Internet links to scientific articles about HE/SREAT published between 2010 and 2016. New in this expanded edition are interviews with some of the most highly respected clinicians in the world in which they share their knowledge and experience with both researching HE and treating patients with the disease. Additionally, this edition includes tips for living with HE, and an extensive glossary of related terms, acronyms, and medications.
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