The NOMID Alliance is a 501 (c)(3) non-profit public charity dedicated to promoting awareness, proper diagnosis and treatment, and improved care for people with CAPS (Cryopyrin-Associated Periodic Syndromes) and other autoinflammatory diseases. There are many autoinflammatory diseases with symptoms that are present from childhood or infancy. A few develop symptoms in adulthood, or late childhood. CAPS are caused by a rare mutation of the NLRP3 (CIAS1) gene in the cryopyrin inflammasome. These CAPS diseases include: Neonatal-Onset Multisystem Inflammatory Disease (NOMID)-also known as Chronic, Infantile, Neurological, Cutaneous and Articular Syndrome (CINCA), Muckle-Wells (MWS), and Familial Cold Auto inflammatory Syndrome (FCAS)-also known as Familial Cold Urticaria (FCU).
To continue increasing awareness about Cryopyrin-Associated Periodic Syndromes (CAPS) and other autoinflammatory diseases. There are specific signs and symptoms with CAPS that are present at birth or in early infancy, such as: Characteristic rashes, fevers, abnormal lab findings, and other symptoms. Earlier diagnosis and treatment of these rare syndromes, especially in early childhood, could greatly improve the quality of life for patients.
Act as a united voice worldwide to promote improved collaboration amongst healthcare professionals dealing with autoinflammatory diseases; so that all people suffering from these rare syndromes can have an accurate diagnosis and improved access to the most beneficial care and treatment available.
To serve as a resource and advocate for individuals, families, and friends that are dealing with CAPS, and other autoinflammatory diseases.
Encourage medical and pharmaceutical groups to continue researching treatments for autoinflammatory diseases.
Increase collaboration on projects and awareness efforts with other organizations that deal with autoinflammatory diseases. We are also interested in working with organizations that are helping to improve research, care, awareness and quality of life for patients with rare diseases worldwide.
