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The Scleroderma Association of BC (SABC) serves as a support for scleroderma patients and their families, including those who are also affected by other related diseases such as pulmonary arterial hypertension (PAH). Virtually all persons with scleroderma have some loss of lung function, often in the form of pulmonary fibrosis and/or systemic scleroderma-associated PAH (SSc-PAH). SSc-PAH can be very severe in patients affected by this progressive connective tissue disease.
SABC advocates for the scleroderma community across the province and is committed to promoting disease awareness and improving the quality of life for all patients, including those with SSc-PAH. Through advocacy, we aim to raise public awareness and rally support around the issues affecting the scleroderma community to ensure our voice is heard and needs are met by government decision-makers.
One of these issues is ensuring that our community has publicly funded access to all new and existing treatments—including those in BC who are living with SSc-PAH. To date, over 85% of Canadians now have publicly funded access to Uptravi (selexipag) for the treatment of PAH (including SSc-PAH). However, patients living in BC are still waiting for our government to provide the same access to this potentially life-extending treatment option.
Lend your voice and visit www.takeactionPAH.ca to take action!
SABC has had an amazingly successful June Scleroderma Awareness Month. With three events across the Province, SABC presented a cheque for $52,556.53 to the St. Paul's Foundation for research being done through the Scleroderma Clinic. Valemount’s 2nd annual walk raised $2,153.83, Victoria’s inaugural walk raised $8,803.15 and the 7th Annual Scleroderma Ride for Research contributed $41,600.
This amazing support will allow the researchers to aid in the understanding of molecular pathways responsible for Raynaud’s, calcinosis, other forms of skin damage and lung damage in scleroderma. (Stay tuned this could be huge.) With your support and the dedication of the researchers, we believe this study is a strong step on the path leading to our ultimate goal - finding a CURE.