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    Charter

     

    The purpose of the Rosacea Research & Development Institute [RRDi] is to fund research and development for finding a cure for rosacea by establishing a Medical Advisory Committee [MAC] of the best available minds on rosacea and to publish the results of this endeavor to the public and professional groups. This MAC will provide the direction of the research. Research may also include studying various treatments for the control of rosacea in multi-center, double blind, placebo controlled clinical trial studies. The RRDi is commited to support patient advocacy for those suffering from rosacea. This organization is open to the public and membership is free and has been organized by rosaceans for rosaceans. This organization is a non-profit corporation registered in the State of Hawaii and 501 (c) (3) tax-exempt status approval has been obtained from the IRS effective June 7, 2004. The Articles of Incorporation, the Bylaws, and the Conflict of Interest Policy are available for the public.

     

    Membership is open to the public and is free. Rosaceans are specially invited to join. All who join become members of the corporation and for now this number is not limited but may be revised in the future by the institute.

    A rosacean is anyone who is diagnosed by a physician as having rosacea. All that is necessary to be designated a rosacean institute member is a statement from the member that a diagnosis of rosacea has been obtained from a physician.

    Non-rosaceans are permitted to join and should identify themselves as such upon demand from the institute. Non-rosaceans are those who have not obtained a diagnosis of rosacea by a physician.

    Any member of the institute may be removed from the membership at any time at the sole discretion of the institute. Rules of the institute are published and available to the public. Violation of the rules may be grounds for termination as a member of the institute. Membership in the institute is a privilege.

    Funding will provide a rosacea MAC of the best available minds on finding a cure for this disease. The selection of who is chosen to be in this MAC will be based on not only the qualifications of the individual but also from nominations by both rosacean and non rosaceans members of the institute.

    Sources of funding to the institute will be publicized including the name of the donor unless the donor requests anonymity. Expenses of the institute will be publicized down to the last cent, showing where all the spending went and for what purpose.

    The philosophy and spirit of this institute is that funding should predominately be used for research and development and not for the administration of the institute. Volunteers are an integral part of this spirit and we hope to include member rosaceans and non-rosaceans who are willing to help the purpose of the institute become a reality. We need your help to find a cure for rosacea, to research rosacea, to publish the findings of this research and provide a MAC of the best available minds on rosacea. The views and suggestions of rosaceans will be an integral part in directing the research on rosacea, in choosing the MAC and the directors of the institute. Members of the institute will have a voice in the decision making of the institute, although directors of the institute will make all final decisions.

    Members of the institute will not profit from the institute however the Medical Advisory Committee members or members may be compensated for services rendered to the institute.

    Members will elect a board of directors which will include:

    Director, Assistant Director, Secretary, Treasurer and other board members. The board of directors will decide all matters of the institute and will be volunteers.

    Funding on rosacea research by the RRDi will not be used on animal testing.

    Our Mission Statement may be read by clicking here.

    This charter may be revised from time to time by the institute when deemed appropriate at the sole discretion of the institute.



  • Posts

    • Rod102988 reports, "A year ago this time I was diagnosed with Rosacea due to heavy drinking and long bouts in the sun. I was devastated, depressed and embarrassed. I quit several jobs, tried makeup, turmeric, eating healthy, water etc. You know name it. I spent hundreds on products for up to a year. I even tried Finacea which while it helped the bumps not so much with the redness plus my insurance didn't cover it and it cost $330 a tube. Finally, I did tons of research online and found two products which I use in combination and they only cost a combined $80 on Amazon.  1) La roche Posay Rosaliac AR Intense. It's a visible redness reducing serum made by scientists in France. It's light and has no smell. You apply twice a day after washing.  2) GIGI Bioplasma Azaleic Acid 15 percent cream. This stuff is better than Finacea IMO and much much cheaper. It tackles all the same things as Finacea; redness, blemishes, acne and hyperpigmenation. Now what I do is usually is place both on at the same time but always one significantly less than the other....only on the problems spots. For example, a full dot full of one and miniscule dot full of the other. But, some may get irritated by that I wouldn't suggest starting off like that. In would initially alternate with one each day and then maybe alternate throughout the day. With that said, this cream and serum has worked wonders and its only costing me $80 bucks a month but I could really stretch both to a month and a half of I want to. After using these for 3 months I am amazed and these combination have been a complete and utter life saver."
    • Found this post at healthboard.com:  "My husband and I both have rosacea. We have used Metrogel daily for years and sometimes it would keep the rosacea under control and other times it would not.
      I researched home remedies and this is what has worked for both of us. We no longer have to go to the dermatologist for an Rx for Metrogel. Please note that this is NOT a cure. We do this daily and then we have no recurrence of the rosacea. When I stopped using it, the rosacea would return after a few weeks. I purchased a 12 ounce bottle of baby shampoo. It doesn't matter what brand as long as it is not too runny like water. Then I bought a 1 ounce bottle of 100% tea tree oil at Trader Joes. It doesn't matter where you buy your bottle of 100% tea tree oil. I poured about 1/3 of the 1 ounce bottle of tea tree oil into the 12 ounce bottle of baby shampoo. I then closed the cap of the baby shampoo and shook it really well.  In the beginning when my rosacea was prevalent, every morning I would put some of the tea tree oil infused baby shampoo on those areas. I would leave it on while I brushed my teeth. I tried to keep it on for at least 5 minutes. Then I would rinse it off. That evening I would do it again and keep it on for at least 5 minutes. Then rinse off. After a few days I saw my rosacea disappear. When I stopped this treatment, the rosacea would ultimately return. So now to keep my rosacea from returning I put on the tea tree oil infused baby shampoo every morning while I brush my teeth. I no longer need to put it on at night as the once daily application has kept my rosacea from returning. It is has been well over a year since the rosacea has resurfaced.  My husband still continues to put his application of tea tree oil infused baby shampoo on twice a day because he gets good results and he doesn't want to chance it returning as his rosacea was far worse than mine. This daily regime has worked for both my husband and I. If you choose to try this, I hope it works for you as well." This probably would help improve demodectic rosacea. 
    • Related Articles An empirically generated responder definition for rosacea treatment. Clin Cosmet Investig Dermatol. 2017;10:347-352 Authors: Staedtler G, Shakery K, Endrikat J, Nkulikiyinka R, Gerlinger C Abstract
      OBJECTIVE: The aim of this study was to empirically generate a responder definition for the treatment of papulopustular rosacea.
      METHODS: A total of 8 multicenter clinical studies on patients with papulopustular facial rosacea were analyzed. All patients were treated with azelaic acid and/or comparator treatments. The severity of rosacea was described by the Investigator Global Assessment (IGA) and the number of lesions. Patients with the IGA score of "clear/minimal" were considered as responders, and those staying in the range of IGA "mild to severe" as nonresponders. The respective number of lesions was determined.
      RESULTS: A total of 2,748 patients providing 12,410 measurements were included. After treatment, responders showed 2.23±2.48 lesions (median 2 lesions [0-3]), and nonresponders showed 13.74±10.40 lesions (median 12 lesions [6-18]). The optimal cutoff point between both groups was 5.69 lesions.
      CONCLUSION: The calculated cutoff point of 5.69 lesions allows discrimination of responders (5 or less remaining lesions) and nonresponders (6 or more remaining lesions) of therapeutic interventions in rosacea.
      PMID: 28932125 [PubMed] {url} = URL to article
    • The relationship between migraine and rosacea: Systematic review and meta-analysis. Cephalalgia. 2017 Jan 01;:333102417731777 Authors: Christensen CE, Andersen FS, Wienholtz N, Egeberg A, Thyssen JP, Ashina M Abstract
      Objective To systematically review the association between migraine and rosacea. Background Migraine is a complex disorder with episodes of headache, nausea, photo- and phonophobia. Rosacea is an inflammatory skin condition with flushing, erythema, telangiectasia, papules, and pustules. Both are chronic disorders with exacerbations of symptoms almost exclusively in areas innervated by the trigeminal nerve. Previous studies found an association between these disorders. We review these findings, provide a meta-analysis, and discuss possible pathophysiological commonalities. Methods A search through PubMed and EMBASE was undertaken for studies investigating the association between all forms of migraine and rosacea published until November 2016, and meta-analysis of eligible studies. Results Nine studies on eight populations were identified. Studies differed in methodology and diagnostic process, but all investigated co-occurrence of migraine and rosacea. Four studies were eligible for meta-analysis, resulting in a pooled odds ratio of 1.96 (95% confidence interval 1.41-2.72) for migraine in a rosacea population compared to a non-rosacea population. Conclusion Our meta-analysis confirmed an association in occurrence of migraine and rosacea. Future studies should specifically investigate possible shared pathophysiological mechanisms between the two disorders.
      PMID: 28920449 [PubMed - as supplied by publisher] {url} = URL to article
    • A recently published paper concluded, "Expert groups and evidence-based guidelines agree that topical retinoids should be considered the foundation of acne therapy." So this article explains the increased use of retinoids by physicians over antibiotics since there is concern over antibiotic resistance. This article states, "The use of retinoids plus BPO targets multiple pathways and can often eliminate the need for antibiotics, reducing the likelihood of antibiotic resistance."

      Isotretinoin is just one of the several retinoids used to treat acne. The retinoids mentioned in the article are, "adapalene 0.1% and 0.3%; tazarotene 0.1%; tretinoin 0.01%, 0.025%, 0.038%, 0.04%, 0.05%, 0.08%, and 0.1% in the USA; isotretinoin 0.05% and 0.1% in other regions of the world" and reviews "the evidence supporting why retinoids should be considered the foundation of acne therapy (with a focus on topical retinoids)." The article states, "Both dermatologists and other physicians were less likely to prescribe a retinoid for patients aged 19 or older compared to those aged 10–19." The topical retinoids mentioned in this article are a "fixed combination adapalene 0.3%-benzoyl peroxide (BPO) 2.5% (0.3 A/BPO; Epiduo Forte®, Galderma Laboratories) and topical retinoids (adapalene, tazarotene, or tretinoin) and Retinoids are also available in fixed-combination formulations with BPO [adapalene-BPO 0.1%/2.5% and 0.3%/2.5% (Epiduo® and Epiduo Forte®, Galderma Laboratories)] and clindamycin [tretinoin 0.025%/clindamycin phosphate 1.2% (Veltin, Aqua Pharmaceuticals; Ziana®, Valeant Pharmaceuticals)]."

      The article does address the concern of "retinoid irritation" and offers "Strategies to minimize tolerability issues" in Table 1 but does not mention anything about long term risks of 'accutane induced rosacea' which many in RF and other anecdotal reports have confirmed happens to some.  Dermatol Ther (Heidelb). 2017 Sep; 7(3): 293–304.
      Published online 2017 Jun 5. doi:  10.1007/s13555-017-0185-2
      PMCID: PMC5574737
      Why Topical Retinoids Are Mainstay of Therapy for Acne
      James Leyden, Linda Stein-Gold, and Jonathan Weiss
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