Scleroderma United

Scleroderma United is an international 501(c)(3) nonprofit organization fostering patient-to-patient connections and empowering people with scleroderma around the world. SU’s current initiatives include our “Scleroderma Stories” publication and the creation of a new Patient-Led Education Program.

What is Scleroderma?

Generally classified as an autoimmune rheumatic disease, scleroderma is a group of rare diseases that involve the tightening and hardening of the skin and connective tissues. In some, scleroderma only affects the skin. However, in many patients, it also harms structures beyond the skin, such as blood vessels, internal organs, and the digestive tract.

What is the Scleroderma Stories publication?

Our Scleroderma Stories initiative began in January 2020. The first issue featured the journeys of people living with scleroderma in US states from the east to west coast as well as in countries such as South Africa and Canada. In Scleroderma Stories, scleroderma warriors share their hardships, triumphs, passions, and more. This initiative aims to both raise awareness about this rare disease and help patients understand that they are not alone. Every issue of Scleroderma Stories not only shows the hardships of scleroderma but also emphasizes that scleroderma warriors can live incredibly rich lives – even with a chronic disease. Scleroderma Stories has reached over 10,000 people in 78 countries.

What is the Patient-Led Education Program?

Patients with chronic illnesses often discover their own “tips and tricks” and gain knowledge from their lived experiences. Since scleroderma is rare, it is difficult for patients to access such information, especially if they haven’t met anyone else with scleroderma (which is often the case). SU is launching a new Patient-Led Education Program that will create a community of mutual learning. SU will collaborate with scleroderma warriors to create videos, infographics, articles etc. that share personal experiences with accessibility aids, renal diets, navigating the health system, and more. Providing patients with guidance from fellow patients not only addresses the feelings of isolation that SU was founded to combat but also broadens access life-improving knowledge.