National Rosacea Society marks 30 years of raising awareness, supporting research
This year, the National Rosacea Society celebrates its 30th anniversary as the world’s largest organization dedicated to improving the lives of patients suffering from rosacea.
Since its founding in 1992, the National Rosacea Society (NRS) has pursued its three-fold mission of providing public information on rosacea, raising awareness about the condition and supporting medical research to improve rosacea management and find a potential cure.
“When the society was founded, very little was known about rosacea, even among the scientific community,” Andrew Huff, president and executive director of NRS, told Healio.
In fact, just 3 decades ago, it was estimated that fewer than 200,000 Americans were affected by rosacea — although in reality it impacted the lives of “untold millions,” according to the NRS website. The cause was unknown and, consequently, a cure was out of reach.
As a result, the NRS instituted a grants program in 1999 dedicated to encouraging and supporting medical research that may lead to new discoveries and treatments for this poorly understood condition.
“Our research grants program is entirely funded by member donations and has awarded more than $1.6 million in grants for a broad range of studies,” Huff explained. “NRS-funded studies have been instrumental in identifying the pathophysiology and continue to reveal new facets of the disease.”
After the establishment of its grants program, the NRS organized a consensus committee and review panel of 21 medical experts to establish a standard definition, classification system and terminology for rosacea.
“In order to study a disease and develop potential treatments, it needs to be formally defined,” Huff said.
In 2002, the Journal of the American Academy of Dermatology published the NRS terms.
Two years later, the NRS expert committee published a standard grading system to aid research and clinical diagnosis, and to provide standard criteria for assessing therapeutic success, according to Huff. These standards were soon adopted by the FDA and continue to be used in clinical trials for new products today.
“Through the society’s efforts with Rosacea Awareness Month in April, patient education materials, and work with consumer and professional media, more people than ever are familiar with the disorder,” Huff said.
An update to the NRS classification system that focused on rosacea phenotypes and individual features was published in 2017. In 2020, the NRS expert committee provided updated management options for rosacea with several newly approved products.
“It’s heartening to see new developments in rosacea therapy as we continue to spread awareness of these advances to both patients and health care providers,” Huff said.
Despite the growing public awareness, Huff continued, many rosacea sufferers continue to avoid treatment, with some never realizing that their symptoms can be diagnosed and treated.
“In a survey of 1,675 patients, 82% of those suffering from erythema reported the condition had a negative impact on their general outlook on life,” Huff said. “By continuing to raise awareness and provide education, we aim to help those affected by rosacea get the effective treatment they need.”
Today, the NRS estimates that more than 16 million Americans have this skin condition.
hile the NRS tips its hat to the past 30 years, it looks toward the future in hopes of providing the rosacea population with new treatments, management options and, one day, a cure.
“I want to thank the dermatology community for its support over the past 30 years,” Huff concluded. “We look forward to continuing this important work for many years to come.”
Reference:
- National Rosacea Society. www.rosacea.org. Accessed Nov. 14, 2022.