The AE Alliance blog endeavors to educate, inspire hope and build a community among patients, families and caregivers. This blog is written for families, patients, caregivers and anyone interested in learning more about autoimmune encephalitis.
We are excited to report the first international best practice recommendations for the management of autoimmune encephalitis. The papers result from the hard work and collaboration between 68 AEA Clinicians Network members from 17 countries, initiated and led by Dr. Hesham Abboud. These recommendations will be of great value to AE patients and clinicians all …
This Rare Disease Day, and in honor of Brain Awareness Month, HESA and AE Alliance have come together, to kick off our #AskMeAboutAE campaign, visualizing the consequences of autoimmune encephalitis. No one understands the daily struggles like you and your caregivers. You experience the consequences of AE every day. It is important to talk about …
A study done at Texas Children’s Hospital looked at the use of Rituximab for young people and its short- or long-term adverse events, infections, or recovery time of B lymphocyte subset counts and immunoglobulin levels. The study led by Dr. McAtee involved patients younger than 21 years receiving Rituximab for more than 25 indications, including …
Only a few more days till World Encephalitis Day! WED is a great day to raise awareness for AE. Take a photo of yourself wearing RED and post it to your social media with the #RED4WED on Monday, February 22nd. WED is also a great starting point for raising AE awareness all year round. Raising …
We have had the pleasure of having Dr. Joe Lindley speak at our South Support Group meeting in January. Dr. Lindley is a holistic health practitioner who has been in practice for over 40 years. He is a chiropractor, acupuncturist, and applied kinesiologist who utilizes homeopathy, therapeutic nutrition, and mind-body balancing techniques with his patients. …
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 …
For many AE patients and family members, time seems to stand still during the long hours spent in the hospital, infusion centers, traveling, or even at home while recovering. Listening to music is not only a great way to pass the time, but it can take you to a ‘different’ place, ease your mind and …
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 …
AE and Learning by Alex (AE Survivor) What am I to say? If anything, I want readers to know how AE affects yet another person, writing a blog and (I’m crossing my fingers on this) what a parent, friend, colleague, or, most of all, those in the throes of the illness can take away and use …
Our partner Euroimmun is organizing a great webinar that is open to all. The Euroimmun Academy is proud to present the upcoming “Neurology Webinar Series”. Join us on January 28th from 11-12:30pm EST for our first webinar exploring Autoimmune Encephalitis. For more information or to Register for this free virtual event please click here. This …
