After my daughter became sick at the age of two-and-a-half, my husband and I began a quest to find a doctor who could identify what was ailing her and treat her. Six years and 20 doctors in four states later, we were told she had autoimmune encephalitis (AE).
The AE Alliance wants to make stories like ours — stories of delayed diagnosis and treatment — a thing of the past. That’s why the AE Alliance created the AE Clinicians Network. The network provides a new resource to connect patients, families and medical professionals with clinicians who have experience diagnosing, treating and caring for autoimmune encephalitis. It’s now live on the AE Alliance website.
Users looking for a clinician can search the network several different ways, depending on their needs. One option is filtering for the clinician’s experience diagnosing any of 13 types of AE including NMDAR encephalitis, Voltage Gate encephalitis (VGKC) and antibody-negative AE. The network is also searchable by medical speciality: immunology, neuroimaging, neurology, rehabilitation and/or psychiatrist and rheumatology. Users can refine their searches by type of patient: adult or pediatric. Additionally, the network has a mapping function that allows users to search by geographic location.
Details about a clinician’s professional experience and contact information can be found by clicking on a clinician’s name or map icon.
In addition to helping patients and caregivers locate medical professionals, The AE Clinicians Network can be a resource for clinicians looking to communicate and collaborate with each other.
The AE Clinicians Network currently includes 20 clinicians from around the world. With your help we hope to quickly increase that number. Please share the clinician submission form with your medical team. To ensure willing participation in the network, we ask that only clinicians and medical professionals complete the submission form.
Alicia Halbert lives in Indianapolis with her husband and daughter, who is recovering from AE