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.
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 would like to invite all individuals with a history of anti-NMDA receptor encephalitis (age 15-60 years at the time of symptom onset) to participate in a study of language. The AE Alliance is honored to be participating in a study led by Dr. Anusha Yekoshumar and medical student Kelsey Martin at The Icahn School …
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 …
Psychiatrists play a pivotal role in the diagnosis and treatment of AE. As psychiatric symptoms often dominate the symptoms that occur at onset of this disease, patients may present initially to a psychiatrist who are tasked with identifying abnormal features of psychosis presentations, including alterations in mental status, seizures, and dysautonomia, which may prompt consideration …
On Saturday March 2 the AE Alliance hosted their annual Florence Forth Race. Around 1,000 runners and walkers participated and the weather was just perfect for a run. We are thankful to everyone that supported this great community event; the participants, the 100+ volunteers who made it all possible, those who supported us financially (raising …
It was September 4th, 2018, 18 days before I was getting married. I received a phone call from one of my mom’s co-workers. Apparently, my mom didn’t come in to work that day and didn’t call in sick either. They got my number from her emergency contacts. They told me that she had been a …
Boston Children’s Hospital would like your help in improving the care of children with Autoimmune Encephalitis. Boston Children’s Hospital is conducting a research study to explore whether parents are using social media to learn about their child’s health condition, and how this may affect their child’s medical care. They are inviting you to complete a …
This is a two-day international meeting on 5-6 June 2019 for clinicians and scientists looking to appreciate the breadth of translational autoimmune neurology. This inaugural meeting will cover the clinical features of CNS and PNS diseases, methodological aspects of immunological assays, applied T and B cell pathophysiology, and questions relating to immunological tolerance. By being …
On #RareDiseaseDay Charity shares her journey with Autoimmune Encephalitis: March 2018 was like every other year, I was preparing to do my spring cleaning. My husband Patrick and I, had our birthday celebrations and all our visitors had left to go home. I woke up and thought that it was a great day to start cleaning so I got out my cleaning supply bucket and cleaning supplies, recruited …
With Rare Disease Day coming up tomorrow, it is important to remember all the ways the medical field can help those who are suffering from rare illnesses. The collection and sharing of data, along with new advancements in technology are helping to break through barriers of rare diseases. Better patient care is ultimately a must, …
