Our Network Members
Autoimmune Registry is proud to partner with our Network members. Together, we can share data and advance research on autoimmune diseases. Join today to be a part of our network and connect with others.
The International Autoimmune Encephalitis Society (IAES) is the only Family/Patient-centered organization for people with a diagnosis of Autoimmune Encephalitis. Leading with integrity, IAES strives to advance services, and education, increase awareness . . .
Story Booth lets patients, caregivers, and clinicians share their stories, in their own voices. These stories are made available to health researchers to inspire research that focus on what matters to patients, where participation is a valued and meaningful experience.
Warm Autoimmune Hemolytic Anemia is a Facebook group dedicated to patients with this rare autoimmune disease. The Autoimmune Registry shares information and research trials on this disease with the goal of reaching better diagnostic and treatment protocols.
Bullous Pemphigoid Warriors Support is a Facebook group for patients and family members. Members share their experiences with diagnosis, symptoms, treatment, and comorbidities. The group also aims to raise more awareness for this rare autoimmune disease.
The Brain Inflammation Collaborative's mission is to revolutionize the diagnosis and treatment of neuroinflammatory illnesses through coordinated research efforts as well as through advocacy, awareness, and education. They aim to ensure that brain inflammation impacting mental health is properly diagnosed and treated.
The Lichen Sclerosus Support Network (LSSN) stands as a beacon of support for individuals and partners navigating the complexities of life with Lichen Sclerosus (LS). This non-profit organization goes beyond providing mere information – it empowers those affected by LS to thrive.
The Myasthenia Gravis Association (MGA) is dedicated to supporting individuals, families, friends, and communities impacted by myasthenia gravis through support groups, education and awareness events, our clinic partnerships and contributions to research. The MGA has in person support groups as well as virtual groups where all are welcome. The MGA also provides new patient packets to those who are newly diagnosed with myasthenia gravis.
Project Clio is a non-profit research organization dedicated to better understanding autoimmune disease, especially those that disproportionately affect women, children, and people of color. It is currently recruiting for an IRB-approved study.
Its mission is to connect patients living with rare diseases in India, the USA, and globally with clinical trials, patient advocacy groups, research, and international Consortia such as Global Gene, IRDiRC, NORD, RARE-X, RDI, and UDNI.
The Savvy Cooperative is a patient-owned co-op that believes patients and caregivers should be involved in every step of the creation of a healthcare product or service. Savvy does this by giving patients and caregivers direct ways to share their experiences with health innovators and advocating that they be fairly compensated for their contributions.
Male Lupus Warriors is a 501(c)(3) non-profit that aims to become a voice for males with lupus to inspire them to advocate for themselves through educating, supporting, and providing financial assistance to those diagnosed with lupus.
Open Medicine Foundation (OMF) funds open, collaborative research to discover treatments and a cure for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Long COVID, and related chronic, complex diseases. OMF fights these diseases with the power of research and resources giving hope to more than 85 million people suffering today. Join OMF's StudyME Registry for access to critical ME/CFS and Long COVID research studies taking place worldwide.
IgG4-RD Life aims to raise awareness, foster community support, provide resources and services, and advocate for better care and research for all those affected by IGG4-RD and other rare diseases. They commit to spreading hope, education, and empowerment, one episode at a time. IgG4-RD Life also has a Facebook group.
Multiple Autoimmune Syndrome is a Facebook group created to help patients with more than one autoimmune disease. Members share information such symptoms and medications to help each other with their treatment journeys.
Pernicious Anaemia Society is a UK-based charity with global membership. Its mission is to secure a full and comprehensive review of Pernicious Anaemia that can lead to more timely diagnoses and better treatment. It offers support to members while raising awareness for the disease.
Since its founding in 1990, the Celiac Disease Foundation has funded and executed international initiatives in three principal areas to bring an end to the suffering caused by celiac disease: medical research, patient and healthcare provider education, and public policy advocacy.
The Foundation for Peripheral Neuropathy’s mission is to improve the lives of those affected by peripheral neuropathy through awareness, education, advocacy, and research to advance the discovery of new therapies and cures.
Encephalitis411 serves as a link between patients, caregivers, clinicians, scientists, and other related stakeholders. Together, they are on a mission to improve the quality of life for those impacted by encephalitis. Their work centers around research, awareness, and advocacy.
The Hashimoto’s Encephalopathy/SREAT & Seronegative Autoimmune Encephalitis Alliance was formed in 2012 by two HE patients. HESA’s mission is to collect, archive, and share information regarding Hashimoto’s Encephalopathy (HE). They also share information relevant to HE/SREAT and SAE as well as updates on HESA's activities and publications.
