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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 […]
Autism, or autism spectrum disorder (ASD), refers to a broad range of conditions characterized by challenges with social skills, repetitive behaviors, speech, and nonverbal communication. There are many subtypes of autism, most influenced by a combination of genetic and environmental factors. The current prevalence of ASD is estimated to be 1.5% or higher in developed […]
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 […]
Autoimmune psychosis: an international consensus on an approach to the diagnosis and management of psychosis of suspected autoimmune origin. A group of renowned international physicians, led by Dr. Tom Pollak and senior authors Prof. Souhel Najjar, Prof. Karl Bechter and Prof. Angela Vincent, worked together to create a consensus on diagnosis and treatment of autoimmune […]
The two main classes of the immune system are the innate immune system and the adaptive immune system. The main focus of an investigation into AE has been the role of the adaptive system, as exemplified by auto-antibody identification. A group in Australia led by Dr. Mastura Monif is investigating the function of the innate […]
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 […]
Dr. Sean Pittock and his group at Mayo Clinic Rochester recently completed a clinical trial that was co-sponsored by the AE Alliance. The study evaluated IVIG treatment in patients with autoimmune epilepsy who fail to benefit from standard epilepsy medications and/or for those where corticosteroids are not considered a treatment option. Last week, in a […]
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 […]
