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National Rosacea Society

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National Rosacea Society
AbbreviationNRS
Founded1992; 32 years ago (1992)
Legal status501(c)(3) non-profit organization
HeadquartersChicago, Illinois
Area served
United States
Websitewww.rosacea.org

The National Rosacea Society (NRS) is a 501(c) nonprofit organization dedicated to improving the lives of the estimated 16 million Americans who suffer from rosacea, a chronic facial skin disorder. Its mission is to raise awareness, provide health information, and support medical research that may lead to improvement in the management, prevention, and potential cure for rosacea.[1]

History

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Although rosacea was first described by Guy de Chauliac in the 14th century and included Chaucer's The Canterbury Tales,[2] when the National Rosacea Society was founded in 1992 rosacea was still considered a rare disease, and its first approved treatment, topical metronidazole, received orphan drug designation by the U.S. Food and Drug Administration in the belief that fewer than 200,000 Americans suffered from it.[3] It soon became evident that rosacea affected the lives of millions, who had previously failed to realize they had a medical condition that could be treated. A 2018 study estimated global incidence of rosacea to be more than 5%, or equivalent to around 415 million.[4]

Awareness

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The National Rosacea Society designates each April as Rosacea Awareness Month[5] and conducts national communications, public relations, and social media activities throughout the year. The society also produces patient education materials.[6]

In 2024, the Society launched a Seal of Acceptance program to identify gentle skin care and cosmetic products that have been clinically tested and evaluated to be unlikely to irritate rosacea skin.[7][8]

Support for research

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In 1999,[9] the National Rosacea Society launched a patient-funded research grants program to support scientific research into potential causes and other key aspects of rosacea that may lead to improvements in its management, prevention, or potential cure. Because the etiology of rosacea is unknown, a high priority in awarding grants is given to studies relating to such areas as the pathogenesis, progression, mechanism of action, cell biology, and potential genetic factors of rosacea. Research in such areas as epidemiology, predisposition, quality of life, and relationships with environmental and lifestyle factors may also be funded.[10]

Since its inception, more than $1.5 million has been awarded to support more than 70 studies.[11]

Publications

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To provide a basis 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, published in 2002,[12] as well as a standard grading system published in 2004.[13] The classification system was instrumental in establishing the clinical subtypes—erythematotelangiectatic rosacea, papulopustular rosacea, phymatous rosacea, and ocular rosacea—commonly used to describe the disease.[14][15] In 2009, an NRS consensus committee and review panel of 26 medical experts published standard management options for rosacea.[16][17]

In 2017, an NRS consensus committee and review panel of 28 medical experts published an updated classification and pathophysiology of rosacea,[18] reflecting the increased understanding of the disease and its progression gained in the 15 years since the original classification was published. The updated classification shifted focus away from subtypes to a phenotype approach to diagnosis.[19][20] The article was accompanied by an editorial on rosacea comorbidities and areas for future research.[21]

In 2020, an NRS consensus committee and review panel of 27 medical experts published updates standard management options for rosacea,[22] intended to provide a comprehensive summary of treatment options for the respective phenotypes identified in the updated standard classification of rosacea, and recommending that physicians to tailor therapy to each patient's individual case.[23]

References

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  1. ^ "Guidestar: National Rosacea Society". Retrieved May 2, 2019.
  2. ^ Rolleston, JD (1933). "A Note on the Early History of Rosacea". Journal of the Royal Society of Medicine. 26 (4): 327–329. doi:10.1177/003591573302600401. PMC 2204565. PMID 19989108.
  3. ^ "Curatek's Topical Metrogel (Metronidazole) Gets Orphan Designation". The Pink Sheet. March 14, 1988. Retrieved April 26, 2019.
  4. ^ Gether, L; Overgaard, LK; Egeberg, A; Thyssen, JP (2018). "Incidence and prevalence of rosacea: a systematic review and meta-analysis". British Journal of Dermatology. 179 (2): 282–289. doi:10.1111/bjd.16481. PMID 29478264.
  5. ^ "National Rosacea Society designates April as "Rosacea Awareness Month"". Practical Dermatology. April 3, 2018. Retrieved May 2, 2019.
  6. ^ "Q&A: Informed patients, physicians improve rosacea care". Healio Dermatology. April 2, 2021. Retrieved June 9, 2021.
  7. ^ "National Rosacea Society Seal of Acceptance". rosacea.org. Retrieved March 5, 2024.
  8. ^ Andrus, Emma; Draelos, Zoe Diana (February 13, 2024). "National Rosacea Society Launches Seal of Acceptance Program". Dermatology Times. Retrieved March 5, 2024.
  9. ^ "Grants Program Is Set To Support Rosacea Research". Rosacea Review newsletter. Spring 1999. Retrieved April 26, 2019.
  10. ^ "Research grants from outside organizations". American Academy of Dermatology. Retrieved May 2, 2019.
  11. ^ "National Rosacea Society: New Grants Available in 2019". Practical Dermatology. December 19, 2018. Retrieved April 26, 2019.
  12. ^ Wilkin, J; Dahl, M; Detmar, M; Drake, L; Feinstein, A; Odom, R; Powell, F (2002). "Standard classification of rosacea: Report of the National Rosacea Society Expert Committee on the Classification and Staging of Rosacea". Journal of the American Academy of Dermatology. 46 (4): 584–587. doi:10.1067/mjd.2002.120625. PMID 11907512.
  13. ^ Wilkin, J; Dahl, M; Detmar, M; Drake, L; Liang, MH; Odom, R; Powell, F (2004). "Standard grading system for rosacea: report of the National Rosacea Society Expert Committee on the classification and staging of rosacea". Journal of the American Academy of Dermatology. 50 (6): 907–912. doi:10.1016/j.jaad.2004.01.048. PMID 15153893.
  14. ^ Reszko, AE; Granstein, RD (2008). "Pathogenesis of rosacea". Cosmetic Dermatology. 21 (4): 224–232. doi:10.1016/j.jaad.2004.01.048. PMID 15153893.
  15. ^ Bolognia, Jean L; Lorizzo, Joseph L; Rapini, Ronald P (2003). Dermatology (1st ed.). Mosby. p. 546. ISBN 0323024092.
  16. ^ Odom, R; Dahl, M; Dover, J; Draelos, Z; Drake, L; Macsai, M; Powell, F; Thiboutot, D; Webster, GF; Wilkin, J (2009). "Standard management options for rosacea, part 1: overview and broad spectrum of care". Cutis. 84 (1): 43–47. PMID 19743724.
  17. ^ Odom, R.; Dahl, M.; Dover, J.; Draelos, Z.; Drake, L.; MacSai, M.; Powell, F.; Thiboutot, D.; Webster, G. F.; Wilkin, J.; National Rosacea Society Expert Committee on the Classification Staging of Rosacea (2009). "Standard management options for rosacea, part 2: Options according to subtype". Cutis. 84 (2): 97–104. PMID 19746768.
  18. ^ Gallo, RL; Granstein, RD; Kang, S; Mannis, M; Steinhoff, M; Tan, J; Thiboutot, D (2018). "Standard classification and pathophysiology of rosacea: The 2017 update by the National Rosacea Society Expert Committee". Journal of the American Academy of Dermatology. 78 (1): 148–155. doi:10.1016/j.jaad.2004.01.048. PMID 29089180.
  19. ^ Tan, J; Berg, M; Gallo, RL; Del Rosso, JQ (2018). "Applying the phenotype approach for rosacea to practice and research". British Journal of Dermatology. 179 (3): 741–746. doi:10.1111/bjd.16815. PMID 29799114.
  20. ^ "New Rosacea Classification System Encourages More Precise Assessment and Treatment". Practical Dermatology. July 11, 2018. Retrieved May 2, 2019.
  21. ^ Gallo, RL; Granstein, RD; Kang, S; Mannis, M; Steinhoff, M; Tan, J; Thiboutot, D (2018). "Rosacea comorbidities and future research: The 2017 update by the National Rosacea Society Expert Committee". Journal of the American Academy of Dermatology. 78 (1): 167–170. doi:10.1016/j.jaad.2017.06.150. PMID 29102687. S2CID 19568272.
  22. ^ Thiboutot, D; Anderson, R; Cook-Bolden, F; Draelos, Z; Gallo, RL; Granstein, RD; Kang, S; Gold, LS; Tan, J (2020). "Standard management options for rosacea: The 2019 update by the National Rosacea Society Expert Committee". Journal of the American Academy of Dermatology. 82 (6): 1501–1510. doi:10.1016/j.jaad.2020.01.077. PMID 32035944. S2CID 211071084.
  23. ^ "New rosacea clinical management guidelines focus on symptomatology". Dermatology News. May 26, 2020. Retrieved July 28, 2020.
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