Patient Support
We are looking for volunteers to help us manage our online Smart Patients AE community. All you need is a computer, an internet connection, and a passion for helping others affected by AE. The Smart Patients online AE community provides our AE community with a safe online platform to connect with others, from anywhere, at […]
Our online AE Smart Patients Community has undergone a make-over, making it even easier to search by topic and connect. You can join the community for free to share, interact, and learn from others affected by autoimmune encephalitis in a safe, supportive environment. We started working with Smart Patients in September 2018 to provide our […]
November is National Family Caregivers Month, which recognizes and supports all the work caregivers do to support their loved ones with autoimmune encephalitis. There are over 53 million Americans who are unpaid caregivers to family, friends, and neighbors. Caregiving often has a significant impact on the life of the caregiver. It can make maintaining your […]
Everyone knows about the devastation the forest fires are causing in California, Washington, and Oregon. Millions of acres have burned, thousands of buildings have been destroyed, and lots of families have seen their house burn down. Amidst, the devastation, there was a light, a CASPR2 encephalitis survivor. Bob Given, who is 76 years old, was […]
The AE community is all too familiar with insurance companies denying coverage for treatments and the cumbersome appeals process they must undergo to get that much-needed treatment. These denials and appeals take up a lot of time & energy and produce frustration and uncertainty. These complications come on top of fighting the disease itself and […]
We are excited to share the July edition of our newsletter, featuring Q&A with our Medical Advisory Board, an inspiring AE journey, and much more! This edition is dedicated to research, spotlighting important research initiatives, and advancements in the field. Enjoy! THE JULY NEWSLETTER
Hashimoto’s Encephalopathy Streat Alliance (HESA) and AE Alliance are teaming up to support you and your child with the transition from pediatric to adult AE care. Moving from pediatric to adult care in the health care system can be a complex and emotional process, especially when your child has a rare disease. A few key […]