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 …
#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 …
‘What is AE?’, seems like an easy question to answer, right? AE refers to conditions where the body’s immune system, whose job is to fight infection, mistakenly attacks healthy brain cells causing neurologic and psychiatric symptoms. But what does that really mean? And what if you or a loved one gets this diagnosis and everything …
To our AE Alliance family and friends, In these unsettling days requiring extraordinary measures to safeguard against COVID-19, we, at the AE Alliance, are more concerned than ever for your wellbeing. From its outset, there has been uncertainty, confusion, and anxiety about this virus. Disruptions to our daily lives are unprecedented and information is rapidly …
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 …
Today is Rare Disease Day and the kick-off of our ‘Ask me about AE’ campaign. Each year, Rare Disease Day takes place on the last day of February. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. Like …
