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  • Mission Statement

     

     

    The Rosacea Research & Development Institute [RRDi] is the first non-profit organization made by rosaceans for rosacea sufferers that will collect donations for rosacea research to be performed by physicians and biomedical research scientists and includes these specific goals:

    mission_statement.png

     

     

    Goal # 1: To be the first non profit organization for rosacea patient advocacy.

    Goal # 2: To have a majority of rosaceans the right to vote who sits on the board of directors.

    Goal # 3: To make this the first rosacea specific non profit organization to utilize most of the donations for research and treatment development. This is in stark contrast to non profit organizations that spend 50% to 60% of their donations on paying their staff, board of directors or private contractors.

    Goal # 4: To allow rosacea sufferers to guide where and how the money is spent on rosacea research and be the first non profit organization to allow rosaceans to be members of the corporation. Until June 7, 2004, the date of incorporation, there had been no other non profit organization that allowed input from rosacea sufferers.

    Goal # 5: To attain a level such that the RRDi can directly impact medical articles published on the subject, information disseminated to physicians and rosacea sufferers and apply positive pressure on the medical community that does not take rosacea seriously.

    Goal #6: Continue to publish the Journal of the RRDi and fund all authors who contribute an article.

    For more information on how and why this non profit organization for rosacea was formed click here.

    Our Charter can be read by clicking here.



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    • Related Articles Spotlight on brimonidine topical gel 0.33% for facial erythema of rosacea: safety, efficacy, and patient acceptability. Patient Prefer Adherence. 2017;11:1143-1150 Authors: Anderson MS, Nadkarni A, Cardwell LA, Alinia H, Feldman SR Abstract
      BACKGROUND: Brimonidine tartrate is a highly selective alpha 2 agonist that induces direct vasoconstriction of small arteries and veins, thereby reducing vasodilation and edema.
      OBJECTIVE: To review the current literature regarding the safety, efficacy, and patient acceptability of brimonidine 0.33% gel.
      METHODS: A PubMed search was performed using the terms brimonidine 0.33% gel, rosacea, safety, efficacy, and acceptability. Peer-reviewed clinical trials and case reports from 2012 to 2016 were screened for inclusion of safety, efficacy, and/or patient acceptability data.
      RESULTS: Brimonidine topical gel 0.33% is associated with mild, transient skin-related adverse reactions. Efficacy may be achieved within 30 minutes of administration with maximal reductions in erythema 3-6 hours after administration. Patient satisfaction with use of brimonidine topical gel is superior to vehicle gel for facial appearance, treatment effect, facial redness, and daily control of facial redness.
      LIMITATIONS: Studies were typically limited to 1-year follow-up. Only one study has examined the use of brimonidine topical gel in combination with other rosacea and acne medications.
      DISCUSSION: Brimonidine topical gel 0.33% is a safe, effective, and patient-accepted treatment for facial erythema of rosacea.
      PMID: 28740369 [PubMed] {url} = URL to article
    • Related Articles Late onset asymptomatic pancreatic neuroendocrine tumor - A case report on the phenotypic expansion for MEN1. Hered Cancer Clin Pract. 2017;15:10 Authors: Kaiwar C, Macklin SK, Gass JM, Jackson J, Klee EW, Hines SL, Stauffer JA, Atwal PS Abstract
      BACKGROUND: Multiple endocrine neoplasia type 1 (MEN1) is a hereditary cancer syndrome associated with several endocrine as well as non-endocrine tumors and is caused by mutations in the MEN1 gene. Primary hyperparathyroidism affects the majority of MEN1 individuals by age 50 years. Additionally, MEN1 mutations trigger familial isolated hyperparathyroidism. We describe a seemingly unaffected 76-year-old female who presented to our Genetics Clinic with a family history of primary hyperparathyroidism and the identification of a pathogenic MEN1 variant.
      CASE PRESENTATION: The patient was a 76 year-old woman who appeared to be unaffected. She had a family history of a known MEN1 pathogenic variant. Molecular testing for the known MEN1 mutation c.1A > G, as well as, biochemical testing, MRI of the brain and abdomen were all performed using standard methods. Molecular testing revealed our patient possessed the MEN1 pathogenic variant previously identified in her two offspring. Physical exam revealed red facial papules with onset in her seventies, involving her cheeks, nose and upper lip. Formerly, she was diagnosed with rosacea by a dermatologist and noted no improvement with treatment. Clinically, these lesions appeared to be facial angiofibromas. Brain MRI was normal. However, an MRI of her abdomen revealed a 1.5 cm lesion at the tail of the pancreas with normal adrenal glands. Glucagon was mildly elevated and pancreatic polypeptide was nearly seven times the upper limit of the normal range. The patient underwent spleen sparing distal pancreatectomy and subsequent pathology was consistent with a well-differentiated pancreatic neuroendocrine tumor (pNET).
      CONCLUSIONS: Age-related penetrance and variable expressivity are well documented in families with MEN1. It is thought that nearly all individuals with MEN1 manifest disease by age 40. We present a case of late-onset MEN1 in the absence of the most common feature, primary hyperparathyroidism, but with the presence of a pNET and cutaneous findings. This family expands the phenotype associated with the c.1A > G pathogenic variant and highlights the importance of providing comprehensive assessment of MEN1 mutation carriers in families that at first blush may appear to have isolated hyperparathyroidism.
      PMID: 28736585 [PubMed] {url} = URL to article
    • The Healthy Geezer: Red, bumpy nose is rosacea, not booze, By Fred Cicetti, Times Herald-Record
    • Related Articles Improvement of Rosacea During Acyclovir Treatment: A Case Report. Am J Clin Dermatol. 2017 Jul 21;: Authors: Badieyan ZS, Hoseini SS PMID: 28733947 [PubMed - as supplied by publisher] {url} = URL to article
    • Phymatous (Rhinophyma) [aka Subtype 3] This phenotype responds to treatment very well. Phymatous rosacea is uncommon. The most frequent phymatous manifestation is rhinophyma (known familiarly as "whiskey nose" "brandy nose" or "rum blossom"). In its severe forms, rhinophyma is a disfiguring condition of the nose resulting from hyperplasia of both the sebaceous glands and the connective tissue. Rhinophyma occurs much more often in men than in women (approximate ratio, 20:1), [1] and a number of clinicopathologic variants have been described. [2] Although rhinophyma is often referred to as "end-stage rosacea," it may occur in patients with few or no other features of rosacea. The diagnosis is usually made on a clinical basis, but a biopsy may be necessary to distinguish atypical, or nodular, rhinophyma from lupus pernio (sarcoidosis of the nose); basal-cell, squamous-cell, and sebaceous carcinomas; angiosarcoma; and even nasal lymphoma. [3] Older papers usually mention how rosacea progresses in stages and ends up in subtype 3, but recent studies indicate that this is not necessarily true. One can develop phenotype 5 without going through any 'stages.' [read this post] One report says, "It can affect nose (rhinophyma), chin (gnatophyma), forehead (metophyma), ears (otophyma) and eyelids (blepharophyma). Rhinophyma is the most frequent location..." [15] For images of phenotype 5 (formerly Subtype 3) click below: http://goo.gl/BI2lf;  28 Images of Rhinophyma A classic example of Subtype 3 is WC Fields (the rosacea poster boy):
      Another classic example is this painting in the Louvre, "The Old Man and His Grandson" by Ghirlandiao around the year 1480.


      There are Five Variants of Rhinophyma:
      Glandular
      Fibrous
      FibroangiomatousActinic
      Rhinophymous
      leishmaniasis  This is a great thread to read about Subtype 3. Treatment There are a number of different treatments for rhinophyma, including surgery, but it is better to treat the rosacea before it reaches the advance stage of rhinophyma. However, once rhinophyma has developed it can usually be corrected by surgery using either laser, scapel, or dermabrasion. The good thing about rhinophyma is that though this condition is generally regarded as a severe form of rosacea it is a relatively rare disorder involving thickening of the skin on the nose and the presence of many oil glands and this condition can usually can be corrected. Accutane is usually the drug of choice, but your physician may use other prescription drugs such as antibiotics if you have this skin disorder. Other treatment may involve cryosurgery, dermashaving and electrosurgery. "Coblation of rhinophyma is an effective treatment with few side effects." [4] ""...Initially, the mass was thought to be rhinophyma, but biopsy of the mass revealed noncaseating granulomata consistent with sarcoidosis. The mass resolved following several steroid injections..." [5] Radiofrequency is used to treat rhinophyma. [6]Rhinophyma treated with kilovoltage photons {7]Treatment of rhinophyma with ultrasonic scalpel: case report [8] Radiosurgical excision of rhinophyma. [9] "Surgery is indisputably the treatment of choice for rhinophyma." [10] This report said, "Despite many advances in fundamental understanding, surgical techniques, and related technologies, no single method has been universally embraced and employed as the "gold standard." " [11] Smoothbeam laser [13] Surgical Management [14] Another report says, "Both tangential excision and carbon dioxide laser are well-established, reliable procedures for rhinophymaplasty that preserve the underlying sebaceous gland fundi allowing spontaneous re-epithelialization without scarring with similar outcomes and high patient satisfaction. The original nose shape and nearly normal skin surface texture are preserved by quickly removal of the hypertrophic tissue sparing the pilosebaceous tissue. The CO(2) laser is more capital intensive and results in higher fees compared with the simpler cold blade tangential excision. In our experience the ease of use, accuracy and precision of the lasers offer is not justified by the increased costs." [16] Another report, which says, "a surgical "gold standard" for treating the distorting phymatous skin alterations has not yet been established," it goes on to state, "the combination of a bovine collagen-elastin with simultaneous autologous non-meshed split-thickness skin grafting" was used in a surgery, and "may ultimately avoid the recurrence of rhinophyma and contribute to a full skin repair leading to satisfactory functional and aesthetic outcome." [17] "This report describes a simple, safe, efficient, and cost-effective approach to the treatment of severe rhinophyma using a scalpel and the electroscalpel, instruments readily available in every operating room." [18] Scalpel Excision and Wire Loop Tip Electrosurgery [19] One reports says, "The CO2 laser is more capital intensive and results in higher fees compared with the simpler cold blade tangential excision. In our experience the ease of use, accuracy and precision of the lasers offer is not justified by the increased costs." [20] Salicylic acid 30% • Jojoba oil • Glycolic acid 70% • Baking Soda • Dawn Ultra Low Dose Isotretinoin Another treatment has been reported, coblation. The report says, "A hand-held coblation ‘wand’ emits a slow stream of saline solution – sterilised salt water – from the end that comes into contact with the nose. At the same time, it emits waves of radiofrequency energy to excite the molecules in the solution which ‘sands’ down the tissue. It also uses a low heat to cauterise (clot) any bleeding blood vessels." [12] Anecdotal Reports  Nose Swelling, big pores, phymous tissue--please post! End Notes [1] Roberts JO, Ward CM. Rhinophyma. J R Soc Med 1985;78:678-681.[iSI] [Medline] [2] Aloi F, Tomasini C, Soro E, Pippione M.
      The clinicopathologic spectrum of rhinophyma.
      J Am Acad Dermatol 2000;42:468-472.[CrossRef][iSI] [Medline] [3] Murphy A, O'Keane JC, Blayney A, Powell FC.
      Cutaneous presentation of nasal lymphoma: a report of two cases.
      J Am Acad Dermatol 1998;38:310-313.[iSI] [Medline]

      [4] Coblation of rhinophyma.
      Timms M, Roper A, Patrick C.J Laryngol Otol. 2011 Apr 27:1-5.

      [5] Sarcoidosis of the external nose mimicking rhinophyma. Case report and review of the literature.
      Goldenberg JD, Kotler HS, Shamsai R, Gruber B.Ann Otol Rhinol Laryngol. 1998 Jun;107(6):514-8.

      [6] Management of mild to moderate rhinophyma with a radiofrequency.
      Erisir F, Isildak H, Haciyev Y.J Craniofac Surg. 2009 Mar;20(2):455-6. [7] Rhinophyma treated with kilovoltage photons.
      Skala M, Delaney G, Towell V, Vladica N.Australas J Dermatol. 2005 May;46(2):88-9. [8] Treatment of rhinophyma with ultrasonic scalpel: case report.
      Tenna S, Gigliofiorito P, Langella M, Carusi C, Persichetti P.J Plast Reconstr Aesthet Surg. 2009 Jun;62(6):e164-5. Epub 2008 Dec 12. [9] Radiosurgical excision of rhinophyma.
      Somogyvári K, Battyáni Z, Móricz P, Gerlinger I.Dermatol Surg. 2011 May;37(5):684-7.
      doi: 10.1111/j.1524-4725.2011.01965.x. Epub 2011 Apr 1. Letter: radiosurgical excision of rhinophyma.
      Niamtu J 3rd.Dermatol Surg. 2012 May;38(5):816-7. doi: 10.1111/j.1524-4725.2012.02383.x. [10] Rhinophyma in rosacea : What does surgery achieve?
      Sadick H, Riedel F, Bran G.Hautarzt. 2011 Oct 19. [11] Nuances in the management of rhinophyma.
      Facial Plast Surg. 2012 Apr;28(2):231-7Authors: Little SC, Stucker FJ, Compton A, Park SS [12] How salt-blasting surgery cured my disfiguring condition called 'drinker's red nose'
      By ROGER DOBSON
      Mail Online / Health
      PUBLISHED: 16:07 EST, 12 May 2012 | UPDATED: 17:23 EST, 12 May 2012
      Read more: http://www.dailymail...l#ixzz1uvARY8Et [13] J Dermatolog Treat.
      2012 Apr;23(2):153-5. Epub 2010 Oct 22. Moderate rhinophyma successfully treated with a Smoothbeam laser.
      Chou CL, Chiang YY [14] Conn Med. 2014 Mar;78(3):159-60.
      Surgical management of rhinophyma: a case report and review of literature.
      Ferneini EM, Banki M, Paletta F, Ferneini CM. [15] An Bras Dermatol. 2012 Dec;87(6):903-5.
      Gnatophyma: a rare form of rosacea.
      Macedo AC, Sakai FD, Vasconcelos RC, Duarte AA. [16] J Craniomaxillofac Surg. 2012 Dec 8. pii: S1010-5182(12)00248-X. doi: 10.1016/j.jcms.2012.11.009.
      Surgical correction of rhinophyma: Comparison of two methods in a 15-year-long experience.
      Lazzeri D, Larcher L, Huemer GM, Riml S, Grassetti L, Pantaloni M, Li Q, Zhang YX, Spinelli G, Agostini T. [17] Int J Surg Case Rep. 2012 Nov 10;4(2):200-203. doi: 10.1016/j.ijscr.2012.11.003. [Epub ahead of print]
      The surgical treatment of rhinophyma-Complete excision and single-step reconstruction by use of a collagen-elastin matrix and an autologous non-meshed split-thickness skin graft.
      Selig HF, Lumenta DB, Kamolz LP. Aesthetic Plast Surg. 2013 Jan 8. [Epub ahead of print] Optimizing Cosmesis with Conservative Surgical Excision in a Giant Rhinophyma. Lazzeri D, Agostini T, Spinelli G.   [18] Aesthetic Plast Surg. 2013 Mar 1. [Epub ahead of print] Management of Severe Rhinophyma With Sculpting Surgical Decortication. Husein-Elahmed H, Armijo-Lozano R.   [19] Dermatol Surg. 2013 Apr 5. doi: 10.1111/dsu.12193. [Epub ahead of print] Treatment of Severe Rhinophyma Using Scalpel Excision and Wire Loop Tip Electrosurgery. Prado R, Funke A, Brown M, Ramsey Mellette J. Source
      Northeast Dermatology Associates, Andover, Massachusetts. [20] J Craniomaxillofac Surg. 2013 Jul;41(5):429-36. doi: 10.1016/j.jcms.2012.11.009. Epub 2012 Dec 8.
      Surgical correction of rhinophyma: comparison of two methods in a 15-year-long experience.
      Lazzeri D1, Larcher L, Huemer GM, Riml S, Grassetti L, Pantaloni M, Li Q, Zhang YX, Spinelli G, Agostini T.
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