Scleroderma Foundation’s 20th National Patient Education Conference Boasts Record Attendance
More than 670 people attended the Scleroderma Foundation’s 20th National Patient Education Conference held recently in Philadelphia, setting the record for the largest conference in its 20-year history. The conference has become “the place” for doctors and scientists to interact with individuals who have scleroderma. At this year’s conference, there were 77 presentations made by 68 different leaders in their fields, ranging from symptom management to research.
“It’s a remarkable experience,” said Kerri Connolly, director of Programs & Services at the Scleroderma Foundation and primary conference organizer. “People return year after year to continue learning and keep up-to-date with the latest information.”
The annual conference provides the opportunity for those with the rare, chronic disease to connect, share experiences and draw strength from each other. Generally classified as an autoimmune rheumatic disease, scleroderma is characterized by an overproduction of collagen (fibrosis) that causes hardening of tissues. This can lead to damage in the organs, which can be fatal. The word “scleroderma” comes from two Greek words: “sclero” meaning hard, and Scleroderma Foundation’s 20th National Patient Education Conference boasts record attendance“derma” meaning skin. Hardening of the skin is one of the most visible signs of the disease.
The conference includes programming for children and teenagers with scleroderma and their parents as well as youth who have a parent with scleroderma. These offerings have increased over the years to meet the growing needs of the juvenile scleroderma population, say Foundation experts. The theme for the 2018 conference — Reach for the Cure — highlights the organization’s mission: support, education and research.
“We’ve spent 20 years creating momentum,” said Connolly. “We believe we’re at the threshold of a new era of scientific discovery in scleroderma, but to get there we need dramatically more research funding.”
The Scleroderma Foundation currently provides $1 million each year in research funding to help new investigators produce data that demonstrates the potential of their theory, enabling them to apply for larger grants from the National Institutes of Health. The Foundation also funds established investigators pursuing novel ideas.
The 2019 Scleroderma Foundation National Patient Education Conference is scheduled for July 19 to 21 in Chicago. More information is available at scleroderma.org/