International Nonprofits Join Forces To Raise Awareness For Rare Liver Disease
DENVER (Colo.) and TORONTO (Ont.) – Nonprofits worldwide are recognizing Global PSC Awareness Day on October 29, 2022, to increase awareness for the rare liver disease primary sclerosing cholangitis (PSC), which affects approximately one in 10,000 people worldwide.
“Awareness about PSC is increasing, but, if we want to find a cure, it’s vital we continue educating the public and the medical community,” says President of PSC Partners Canada Mary Vyas, a caregiver of a person with PSC. “We are excited to join forces with groups from all over the world for Global PSC Awareness Day, because increasing knowledge will lead to better lives for everyone impacted by this devastating disease.”
There are few treatments, no cure, no known cause, and PSC is a disease that is difficult to diagnose due, in part, to the lack of knowledge about this rare disease, even within the medical community.
Primary Sclerosing Cholangitis (PSC) does not discriminate based on age, race, or gender. Additionally:
- Many PSC patients are asymptomatic at the time of diagnosis. PSC is often detected during routine blood tests
- It is estimated that there are close to 55,000 PSC patients in the United States and Canada alone.
- PSC often is found in people with inflammatory bowel disease (IBD), most often ulcerative colitis (UC) and sometimes Crohn’s disease. More than 75 percent of PSC patients have UC. PSC also is associated with other autoimmune diseases.
- PSC isn’t contagious, and is not caused by alcohol consumption.
- Symptoms of PSC include intense itching, severe fatigue, pain, jaundice, and more.
- Many people with the disease end up requiring a liver transplant, and PSC returns in approximately 30 percent of transplanted livers. Numerous people with PSC have received multiple liver transplants.
“PSC may not be well known, but it is devastating to the thousands of people around the globe who are impacted by it,” says Founder and CEO of PSC Partners Seeking a Cure Ricky Safer, who has PSC. “For PSC Awareness Day, we are collaborating with organizations worldwide, because we know that banding together adds power to our message. Additionally, together with PSC Partners Canada, we have dedicated $5.5 million to PSC research, so far, all of which will help us find the treatments and cure that people with PSC need and deserve.”
PSC Partners Seeking a Cure is based in Denver, Colo. The mission of PSC Partners Seeking a Cure is to drive research to identify treatments and a cure for primary sclerosing cholangitis (PSC) while providing education and support for those impacted by this rare disease. Founded in 2005, PSC Partners Seeking a Cure is a 501(c)(3) nonprofit organization. The various programs give support to patients, caregivers, families, and friends, educate patients and the medical community about PSC, and drive ground-breaking research in the search for a cure.
PSC Partners Canada is a registered Canadian charity based in Toronto, Ontario. Established in 2015 by three PSC caregivers living in Canada, PSC Partners Seeking a Cure Canada is the Canadian affiliate of PSC Partners Seeking a Cure. PSC Partners Canada and PSC Partners Seeking a Cure share a joint mission and vision of a world with no PSC.
