Society management

The National Rosacea Society celebrates 30 years of raising awareness and supporting research

November 17, 2022

2 minute read

Source/Disclosures

Source:

Healio Interviews

Disclosures:
Huff does not report any relevant financial information.


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This year, the National Rosacea Society celebrates its 30th anniversary as the world’s largest organization dedicated to improving the lives of patients with rosacea.

Since its founding in 1992, the National Rosacea Society (NRS) has pursued its triple mission of educating the public about rosacea, raising awareness of the disease, and supporting medical research to improve the management of rosacea and find a potential cure.

Rosacea 2

This year, the National Rosacea Society celebrates its 30th anniversary as the world’s largest organization dedicated to improving the lives of patients with rosacea.

“When the society was founded, very little was known about rosacea, even within the scientific community,” Andrew Huf, president and chief executive of NRS, told Healio.

Andrew Hoff

In fact, just 3 decades ago, it was estimated that less than 200,000 Americans were affected by rosacea – although in reality, it has impacted the lives of “millions”, according to the website. of the NRS. The cause was unknown and therefore a cure was out of reach.

As a result, the NRS instituted a grant program in 1999 dedicated to encouraging and supporting medical research that could lead to new discoveries and new treatments for this poorly understood disease.

“Our research grants program is funded entirely by member donations and has awarded more than $1.6 million in grants for a wide range of studies,” Huff explained. “NRS-funded studies have been instrumental in identifying pathophysiology and continue to reveal new facets of the disease.”

After its grant program was established, the NRS organized a consensus committee and review board 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 must be formally defined,” Huff said.

In 2002, the Jjournal of the american academy of dermatology published the terms of the NRS.

Two years later, the NRS’s expert committee published a standard grading system to aid in research and clinical diagnosis, and to provide standard criteria for evaluating therapeutic success, according to Huff. These standards were quickly adopted by the FDA and continue to be used in clinical trials of new products today.

“Thanks to the company’s efforts with Rosacea Awareness Month in April, patient education materials, and work with mainstream and professional media, more people than ever are aware of the disease,” Huff said. .

An update to the NRS classification system focusing on the phenotypes and individual characteristics of rosacea was published in 2017. In 2020, the NRS Expert Panel provided updated management options for rosacea with several newly approved products.

“It is heartening to see new developments in the treatment of rosacea as we continue to bring these advances to patients and healthcare providers,” Huff said.

Despite growing public awareness, Huff continued, many rosacea sufferers continue to avoid treatment, some never realizing that their symptoms can be diagnosed and treated.

“In a survey of 1,675 patients, 82% of those with erythema said the condition had a negative impact on their overall outlook on life,” Huff said. “By continuing to raise awareness and educate, 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.
as the NRS takes its hat off to the past 30 years, it looks to 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 their support over the past 30 years,” Huff concluded. “We look forward to continuing this important work for many years to come. »

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