The COPA Syndrome Foundation is on a mission to discover how the COPA syndrome autoimmune disease damages the lungs, joints and other organs. Today very little is known about the disease. Our goal is to raise public awareness about this disorder and fund research and genetic testing to move forcefully toward improving treatment options and medications. We strive to offer hope, and ultimately a cure, for those suffering with the COPA syndrome, and to support their families who carry this genetic disease.
If you would like to donate to COPA Syndrome Foundation please use the button below to donate through paypal, or you can donate by mailing a check to the address listed at the bottom of the page.
What is COPA Syndrome?
COPA syndrome is an inherited disorder caused by mutations in the coatomer subunit alpha gene, known as COPA. The disorder usually appears early in childhood, and is usually characterized by a combination of severe lung disease and arthritis. If someone suffers from a combination of these symptoms, they may want to consider being tested for COPA syndrome.
The childhood syndrome was only recently discovered when Houston pulmonologists shared research and connected the dots with a team of scientists at the University of California in San Francisco. Their research was published in the April 20th, 2015 online edition of Nature Genetics.
Common complaints of onset in symptoms include difficulty breathing or joint pains due to arthritis. Patients with COPA syndrome usually develop respiratory issues such as bleeding in the lungs or pulmonary hemorrhage or inflammation and scarring in the lungs know as interstitial lung disease (ILD). All patients with the COPA syndrome seem to eventually develop interstitial lung disease and arthritis over time.
How is copa syndrome treated?
Patients are usually treated with medications that suppress the immune system known as immunosuppressive drugs, such as prednisone, rituximab or mycophenolate. It is important to note that research on the syndrome is in the early stages and therefore scientist and doctors are still learning which treatments work best but one goal of this foundation is to identify more patients so that more history and data can be compiled and shared. Talk with your doctor about available options.
Board of Directors
Current Board of Directors of the COPA Syndrome Foundation.