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    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. There are two categories of members: 

    Voting Member (a member who choses voluntarily to provide contact information such as first and last name, mailing address and phone number, email addresses)

    Non Voting Member (a member who only provides one email address)

    A rosacean is anyone who is diagnosed by a physician as having rosacea. All that is necessary to be designated a voting member is a statement from the member that a diagnosis of rosacea has been obtained from a physician as well as the contact information mentioned above for voting members. Voting members should be rosacea sufferers (rosaceans). 

    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 since transparency is a core principle of our non profit organization. 

    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. Voting 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

    • Image of Demodex Folliculorum courtesy of National Geographic - by Darlyne A. Murawski There are substantial anecdotal reports that treatment for demodectic rosacea gets worse before it gets better. The logic behind this is that killing the demodex mites causes a die-off of the mites that takes weeks to accomplish since new eggs are being hatched each day and the "life cycle of demodex mites consists of five phases of development and lasts from 14 to 18 days". [1] Furthermore because the movement of the mites has been shown to be "at a speed of 8-16 mm/h" [2] they may leave the area being treated and return later while planting eggs along the route. During the initial treatment which may take weeks some of the mites are reported to be killed which may cause inflammation and worsen the skin. One explanation of this is the "Jarisch–Herxheimer reaction" (JHR) which has been "traditionally associated with antimicrobial treatment of syphilis." [3] The principle of JHR may indicate a reason why it gets worse before it gets better. One source comments on this by stating, "And while the JHR only technically relates to spirochetal infections (spiral-shaped bacteria) and antibiotics, the concept of symptom-onset or worsening after starting treatment with antimicrobials has been seen to apply more broadly in clinical practice. This is why you’ll often hear practitioners talk about a Herx-reaction, even if it isn’t scientifically accurate. But, what we call ‘die-off symptoms’ is certainly something we see commonly when clients begin addressing bacteria, parasites and yeast pathogens using natural antimicrobials." Furthermore, there are at least six types of bacteria that have been associated with demodex mites. [5] At least one virus has been associated with rosacea [6] and viruses have not been ruled out in demodectic rosacea. There are very little clinical studies done on virus and rosacea. Viruses are in bacteria and comprise more weight in the human body than bacteria by a factor of ten times. [7] More study should be done on why treatment for demodectic rosacea seems in many cases to get worse before it gets better. Nevertheless, reducing demodex density counts in rosacea improves the patient with rosacea. [8] End Notes [1] Demodex Update Subheading, The potential role of Demodex folliculorum mites and bacteria in the induction of rosacea, third paragraph  [2] Russian Study on Demodex Mites and Rosacea Illuminating, (2) The report confirms the size and movement of demodex, second paragraph [3] Jarisch–Herxheimer reaction, Wikipedia [4] Pathogen & Parasite Die-Off Symptoms: How to manage detox side-effects, Bella Lindemann, June 24, 2019 [5] Bacteria Associated with Rosacea and Demodex Mites [6] Candida Albicans [7] Human Microbiome, Brady Barrows  [8] Decreasing Demodex Density Count Improves Rosacea  
    • Related Articles Intense pulsed light for improving dry eye disease in rosacea. J Am Acad Dermatol. 2019 Dec 03;: Authors: Vazirnia A, Wat H, Danesh MJ, Anderson RR PMID: 31809814 [PubMed - as supplied by publisher] {url} = URL to article
    • Related Articles Rosacea-like acute reaction after hyaluronic acid dermal filler. G Ital Dermatol Venereol. 2019 Dec 04;: Authors: Valenti M, Guanziroli E, Mancini LL, Costanzo A PMID: 31804049 [PubMed - as supplied by publisher] {url} = URL to article
    • Related Articles Rosacea associated with increased risk of generalized anxiety disorder: a case-control study of prevalence and risk of anxiety in patients with rosacea. An Bras Dermatol. 2019 Oct 26;: Authors: Incel Uysal P, Akdogan N, Hayran Y, Oktem A, Yalcin B Abstract BACKGROUND: Rosacea may result in emotional distress and anxiety. However, data on the presence of generalized anxiety disorder in rosacea patients are scarce. OBJECTIVE: The aim of the study was to detect the frequency and level of anxiety and depression in patients with rosacea. METHODS: A total of 194 consecutive rosacea patients and 194 age- and sex-matched controls were enrolled. Severity of rosacea was assessed in patients according to the criteria of the National Rosacea Society Ethics Committee. Both patients and controls were evaluated by the Generalized Anxiety Disorder 7-item scale, and severity was measured by the Generalized Anxiety Disorder-Adult. RESULTS: Individuals who were diagnosed with an anxiety and/or depressive disorder were more common in patient group (24.7% vs. 7.2%, p<0,01). Female patients were particularly at risk for having generalized anxiety disorder (OR=2.8; 95% CI 1.15-7.37; p=0.02). STUDY LIMITATIONS: Single center study and limited sample size. CONCLUSIONS: Rosacea patients show greater risk of having anxiety disorders, including generalized anxiety disorder. Female patients, those with lower educational levels, those with phymatous subtype, untreated patients, and patients with prior psychiatric morbidity may be at particular risk for anxiety. It is essential to consider the psychological characteristics of patients to improve their well-being. PMID: 31789266 [PubMed - as supplied by publisher] {url} = URL to article
    • Related Articles ACTH-dependent Hypercortisolemia in a Patient with a Pituitary Microadenoma and an Atypical Carcinoid Tumour of the Thymus. Medicina (Kaunas). 2019 Nov 27;55(12): Authors: Baranowska-Jurkun A, Szychlińska M, Matuszewski W, Modzelewski R, Bandurska-Stankiewicz E Abstract Cushing's syndrome (CS) is a set of clinical symptoms which occur as a result of hypercortisolemia. Endogenous ACTH-dependent CS related to an ectopic ACTH-secreting tumour constitutes 12%-17% of CS cases and is one of the most common causes of paraneoplastic syndromes. This study presents a case of a 31 year-old man with diabetes, hypertension, rosacea, purple stretch marks and hypokalemia. Findings of diagnostic procedures include high concentrations of cortisol and ACTH, pituitary microadenoma and a tumour in the anterior mediastinum. Dynamic hormone tests determined the source of excess hormone secretion and ectopic ACTH-dependent CS was diagnosed. Due to increasing symptoms of superior vena cava syndrome, an emergency resection of almost the whole tumour was performed, with only a small part of the upper pole left because of the proximity of large vessels and a risk of damaging them. On the basis of histopathological tests, an atypical carcinoid tumour of the thymus was identified. Immediately after the surgical procedure, there was a significant reduction of clinical and laboratory traits of hypercortisolemia, yet, during the 46 weeks of postoperative observation, despite chemotherapy, the progression of residual masses of the tumour occurred with metastases and increased hormone indices. The presented case shows and discusses the differentiation of ACTH-dependent hypercortisolemia and its causes, difficulties in surgical therapy and chemotherapy, as well as prognosis for atypical carcinoid of the thymus, which is a rare disease. PMID: 31783507 [PubMed - in process] {url} = URL to article
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