It is estimated that 25 to 40 percent of patients with systemic scleroderma in the United States (approximately 100,000 individuals) have or will develop PAH. At present, many people with systemic scleroderma are unaware of their heightened risk for PAH. Moreover, because scleroderma frequently compromises the function of one or more organ systems, patients tend to be treated by rheumatologists primarily, and secondarily by specialists dealing with their particular form of involvement (e.g., cardiologists, nephrologists, gastroenterologists, and dermatologists). With such a broad spectrum of healthcare professionals engaged in the treatment of systemic scleroderma patients, there is a tremendous need to educate clinicians about the risks of PAH and the necessity for annual echocardiograms. In addition, healthcare professionals need to understand the importance of referring their patients to pulmonologists to receive the proper screening for PAH.

Support: To help patients and their families cope with scleroderma through mutual support programs, peer counseling, physician referrals, and educational information.

Education: To promote public awareness and education through patient and health professional seminars, literature, and publicity campaigns.

Research: To stimulate and support research to improve treatment and ultimately find the cause of, and cure for, scleroderma and related diseases.

In our continuing mission to improve the lives and outcomes of scleroderma patients, the Scleroderma Foundation is partnering with the medical community to ensure that every scleroderma patient is screened annually with echo for PAH.