Patient Support

#GivingTuesdayNow on May 5, 2020, is a global day of generosity and unity, a day to come together and give back in response to the unprecedented need caused by COVID-19. AE Alliance will participate in Giving Tuesday Now and launch the AEA Research Network with webinars by Dr. Sean Pittock (Mayo Clinic) and Dr. Stanley […]

A group of doctors led by Dr. Anusha Yeshokumar has assessed the long-term impact of anti-NMDA receptor encephalitis (anti-NMDARE) on psychosocial outcomes, or emotional and social well-being. Adolescents and adults with self-reported anti-NMDARE were invited to complete an online survey distributed by the Autoimmune Encephalitis Alliance and the Encephalitis Society in 2018. The survey was […]

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 […]

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  

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 […]

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 […]

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 […]