Advocacy
Hi, my name is Andrew and I have a version of Autoimmune Encephalitis called Central Nervous System Vasculitis. I was first diagnosed with the broader AE in 2017, and more recently with the more specific CNSV. I’m running the Ironman 70.3 Victoria, BC at the end of May to raise awareness for AE. According to […]
#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 […]
Living with a rare disease can significantly impact patients and families both financially and socially. To better understand these impacts, the EveryLife Foundation for Rare Diseases has partnered with the Lewin Group to develop an important survey that looks at expenses incurred by families living with rare diseases. These costs are important considerations in healthcare decision-making that could […]
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
Texas Children’s Hospital will hold their AE Day of Strength on July 27 in Houston TX and you are invited to join! The AE Day of Strength will allow patients and their families to hear disease updates, discuss coping strategies and connect with other AE families. There will be special activities to honor all siblings. […]
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 […]
On Tuesday October 6, we launch an exciting new Advocacy program: AE on the Hill Our long-term goal for the ‘AE on the Hill’ program is bold, empowering the AE community to advocate for themselves and their families at the local, state, and federal levels to improve the lives of all those affected by autoimmune […]
We had the pleasure of having psychiatrist Stephen Rush, MD discuss the role of psychiatry in AE at our recent Midwest Support Group meeting. Dr. Rush is an Associate professor of Psychiatry and the Medical Director of Ambulatory Services at the University of Cincinnati Department of Psychiatry and Behavioral Neuroscience. In his practice he not […]