Advocacy

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 […]

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 […]

Rory Halbert was recognized at a University of Indianapolis women’s soccer game recently as part of TeamIMPACT, a program which allows children with serious illnesses to become an honorary member of a college team. Rory was recognized at halftime, as she is graduating from the program. The team wore green to show support for Rory’s […]

AE Alliance is a member of NORD, the National Organization for Rare Disorders. Each year they host The Living Rare, Living Stronger NORD Patient and Family forum, a patient focused conference. The 2019 Living Rare, Living Stronger NORD Patient & Family Forum will bring the rare community together with physicians, medical students, and allied health professionals for […]

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 […]

What Do You Know about Giving Tuesday and the AE Alliance? As Director of the AE Alliance, I first learned about autoimmune encephalitis and the Alliance three years ago and it was not until three months ago I began learning about GivingTuesday. Both organizations are doing good. Here’s a bit more detail about their histories, […]

Autoimmune encephalitis was featured at a November 21, meeting of the Osler Club sponsored by the John P. McGovern Academy of Oslerian Medicine at the University of Texas Medical Branch’s  (UTMB). Following a sit-down dinner, the 48 attendees, many of whom were physicians and physicians in training, filled the room to capacity for the program […]

NORD has launched the Rare Caregiver Respite Program, a first-of-its-kind program aimed at providing caregivers of rare disease patients a much-needed respite.  Caring for a loved one with a rare disease demands significant time, attention, patience and dedication. NORD’s Rare Caregiver Respite Program is designed to give back to caregivers—the parent, spouse, family member, or […]

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  

WEDA 2025 Conference & Conversations Join us for 3 days of inspiring talks, networking, and thought-provoking discussions in person (cannot be attended virtually). CLICK HERE TO REGISTER FOR THE EVENT AND OPTIONAL DINNER VIA EVENTBRITE Come join us at the Kinne Auditorium, Mayo Building, Mayo Clinic Jacksonville FL for a three day event filled with insightful sessions, engaging […]