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). CAPS is caused by a rare mutation of the CIAS1 gene in the cryopyrin inflammasome. These CAPS syndromes include: Neonatal-Onset Multisystem Inflammatory Disease (NOMID)-also known as Chronic, Infantile, Neurological, Cutaneous and Articular Syndrome (CINCA), Muckle-Wells (MWS), and Familial Cold Autoinflammatory Syndrome (FCAS)-also known as Familial Cold Urticaria (FCU).
Goal 1:
To continue increasing awareness about NOMID/CINCA, MWS and FCAS. There are specific signs and symptoms with all CAPS disorders 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 CAPS sufferers.
Goal 2:
Act as a united voice worldwide, to promote improved collaboration amongst healthcare professionals dealing with CAPS disorders, 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.
Goal 3:
To serve as a resource for individuals, families, and friends that are dealing with CAPS, and other other autoinflammatory disorders. One of our long range goals is to develop an advocacy program for patients struggling with their health care system–an ongoing, common issue for all that suffer from these conditions. We also hope to host a CAPS gathering in the future.
Goal 4:
Encourage medical and pharmaceutical groups to continue researching treatments for CAPS, and other autoinflammatory disorders. Due to the rare nature of these syndromes, it is essential that we continue to encourage the medical and pharmaceutical community to develop and fund further research and treatment options.
