Advocacy

Texas Children’s Hospital will hold their AE Day of Strength on July 27 in Houston TX and you are invited to join! The AE Day of Strength will allow patients and their families to hear disease updates, discuss coping strategies and connect with other AE families. There will be special activities to honor all siblings. […]

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 […]

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 […]

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, […]

I am an autoimmune neurologist at the Icahn School of Medicine at Mount Sinai in New York City who cares for children and adults with encephalitis. My interest in this field stems from the first patient I saw on my first day of neurology training. He was a three-year-old boy who presented with changes in […]

For World Encephalitis Day 2019, Dr. Irani talks about his work and research and how he sees the field of AE evolving. Dr. Sarosh Irani is an Associate Professor, Honorary Consultant Neurologist and Wellcome Trust Intermediate Fellow with clinical and laboratory interests in the field of autoantibody-mediated diseases of the central nervous system. He sees […]

For World Encephalitis Day 2019, Dr. Muscal talks about his work and research and how he sees the field of AE evolving. Dr. Eyal Muscal is a pediatric rheumatologist at Texas Children’s Hospital with a MS Degree in Clinical Research whose activities include patient care, fellowship education, quality improvement, and clinical research. He is the Childhood […]

For World Encephalitis Day 2019, Dr. Gallentine talks about his work and research and how he sees the field of AE evolving. Dr. William Gallentine is a pediatric neuroligst at Stanford University in Palo Alto CA. His research interests focus on the role of inflammation and genetics in the development of epilepsy, and the overlap between […]

Just a reminder to let you know that the AE Family weekend is coming up in about four weeks on March 2 in Durham, NC. Meet other families going through similar challenges. Share stories and learn about the latest treatments and discover strategies to make every day better. HAVE FUN AND GET ACTIVE with our annual […]