The National Rosacea Society (NRS) marks its 25th anniversary in 2017, and is pleased to report on the considerable ongoing progress made toward fulfilling its mission of improving the lives of people with rosacea through awareness, education and support of medical research.
“When the NRS was formed in 1992, rosacea was considered a rare disease, and the first treatment for the disorder had been approved as an orphan drug by the U.S. Food and Drug Administration in the belief that it affected fewer than 200,000 Americans,” said Sam Huff, executive director of the NRS. “However, it quickly became apparent that millions of people suffered from rosacea but didn't know they had a medical condition that could be treated.”
Based on subsequent research, the NRS now estimates that more than 16 million Americans, or more than one in 20, suffer from this often life-disruptive condition.
As it became evident that rosacea was both common and poorly misunderstood, the NRS embarked on a public awareness program that resulted in coverage by virtually all of the major print and broadcast media of the day, from Parade and Good Housekeeping to “Good Morning America” and “The Oprah Winfrey Show.” As a result, millions of rosacea sufferers began to seek medical help from dermatologists, who were increasingly able to diagnose and treat this chronic and often complex disorder.
The NRS now designates April as Rosacea Awareness Month each year, and continues to educate the public through media outreach as well as its rapidly growing digital presence. Despite considerable progress over the years, however, a recent large-population study at the Wake Forest School of Medicine estimated that 82 percent of people with rosacea are still currently untreated.1
Since the cause of rosacea is unknown and there is no cure, in 2000 the NRS established a grants program dedicated to encouraging and supporting medical research toward advances in its treatment, management and potential prevention. Funded entirely by individual donations, the research grants program has awarded over $1.5 million to support 66 studies to date, resulting in substantial improvements in the understanding and potentially more effective treatment of the disorder.
To provide a foundation for meaningful scientific investigation, the NRS organized a consensus committee and review panel of 21 medical experts to establish a standard definition and classification system for rosacea, which was published in 2002.2 This was followed by a standard grading system, published in 2004, and standard management options, published in 2009.
Today the NRS provides educational services to more than 2 million rosacea patients each year, while the NRS website, rosacea.org, serves as the leading resource for information about rosacea on the Internet. Meanwhile, the NRS has continued its extensive public awareness program reaching a total audience of more than 400 million people annually at no cost to the public, thanks to the generous support of an increasing number of companies committed to rosacea.
“Most importantly, through the commitment and dedication of rosacea sufferers, physicians, researchers and industry, effective therapies for the full range of potential signs and symptoms of rosacea are now available or on the way,” Huff said. “We’re extremely grateful to all of our members for their continued and vital support.”
To support the Society's research grants program, become an NRS member today — or, if you're already a member, donate now.
References:
1. Wehansen B, Hill DE, Feldman SR. Most people with psoriasis or rosacea are not being treated: a large population study. Dermatol Online J 2016 Jul 15;22 (7):3.
2. Wilkin J, Dahl M, Detmar M, Drake L, et al. Standard classification of rosacea: Report of the National Rosacea Society Expert Committee on the Classification and Staging of Rosacea. J Am Acad Dermatol 2002;46:584-587.