Author: Kimberley de Haseth

AE on the Hill

On Tuesday October 6, we launch an exciting new Advocacy program: AE on the Hill  Our long-term goal for the ‘AE on the Hill’ program is bold, empowering the AE community to advocate for themselves and their families at the local, state, and federal levels to improve the lives of all those affected by autoimmune …

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Medicine Assistance Tool

The AE community is all too familiar with insurance companies denying coverage for treatments and the cumbersome appeals process they must undergo to get that much-needed treatment. These denials and appeals take up a lot of time & energy and produce frustration and uncertainty. These complications come on top of fighting the disease itself and …

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Neurologic syndromes related to anti-GAD65

Antibodies against glutamic-acid-decarboxylase 65 (anti-GAD65) are associated with several neurologic syndromes, including stiff person syndrome and limbic encephalitis. However, their pathogenic role remains controversial. A group led by Dr. Maarten Titulaer (Erasmus University, the Netherlands) studied the clinical relevance of different anti-GAD65 concentrations in patients with neurological disorders and their response to treatment. The group …

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National Advocacy

AEA Family and Friends, We are excited to take our first formal steps in national advocacy on behalf of the AE community. The Alliance has recently joined the EveryLife Foundation for Rare Disease Community Congress, a membership-based strategic advisory council dedicated to bringing patient organizations, industry leaders, and other rare disease stakeholders together to advocate …

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Early Bortezomib Therapy for Refractory NMDAR Encephalitis

NMDAR encephalitis is the most common form of autoimmune encephalitis. It can affect people of all ages, though it is often seen in children and young adults, and it affects women more frequently than men. Treatment is classically described as first-line immunotherapy (corticosteroids, intravenous immunoglobulin, or plasma exchange) and second-line immunotherapy (cyclophosphamide and rituximab). However, …

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How coronavirus affects the brain

Since December 2019, almost 13.5 million cases and 581,103 deaths due to the coronavirus have been reported worldwide, according to the Johns Hopkins Coronavirus Resource Center. There are many papers published on COVID-19 and its consequences, and we, at AE Alliance, are especially interested in how the coronavirus affects the brain. We wanted to share …

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National Burden of Rare Disease Survey

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 …

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