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 …
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 …
AEA Family and Friends, We are excited to take our first formal steps in national advocacy on behalf of the AE community. The Alliance has recently joined the EveryLife Foundation for Rare Disease Community Congress, a membership-based strategic advisory council dedicated to bringing patient organizations, industry leaders, and other rare disease stakeholders together to advocate …
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! VIEW A OUR NEWSLETTER HERE
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 …
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 …
A group of doctors led by Dr. Anusha Yeshokumar have assessed care transitions and caregiver burden among caregivers of individuals with anti-NMDA receptor encephalitis (anti-NMDARE). Surveying caregivers about their experience caring for those with anti-NMDARE and their perceptions of disease progression and recovery provides a unique opportunity to assess aspects of care for patients who …
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 …
AE Family and Friends, Our hearts are filled with gratitude for your extraordinary efforts yesterday, contributing to our Research Network and spreading the word to your families, friends, and colleagues about this significant opportunity to invest in AE research through the Alliance. We set a $10,000 goal at the beginning of the campaign, and we …
This morning we posted a video of Dr. Heather Van Mater on our social media, where she talks about a registry as an area of opportunity to advance AE Research. But what is a registry? Rare diseases present unique challenges for researchers and companies working towards treatments and cures; small and scattered patient populations, difficulty …
