Jump to content
  • charter.png
    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. 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

    • So going to the gym or exercising to increase muscle mass may improve your rosacea. Just about any physician will tell you that exercise and eating healthy will improve not only health but also your rosacea. 
    • Dr. Chris Steele talks about LDN. 
    • That has been my question for a number of years when I noticed no activity here at the RRDi, even though having over 1200 members, hardly anyone posts. I have thought during this time obviously rosaceans prefer social media over the forum style posting that has been around for twenty years, which doesn't have the user experience they are accustomed to using social media platforms. I have been browsing and posting a little at Facebook, Reddit, and Twitter and found that the level of education about rosacea is paltry and mostly these groups of rosaceans are into horse paste. They feel very comfortable showing horrible photos of their rosacea which I find really ironic since I heard so many complaints about joining the RRDi and filling out contact information (so we dropped the requirement and only require an email address). The lack of knowledge about rosacea in these social media groups and the spam posts allowed for all sorts of treatment for rosacea, not to mention the advertising, to me is a sad choice rosaceans have made instead of joining together in to a non profit organization for patient advocacy. At least I know where the rosaceans have gone. Very sad. 
    • Flugs at RF has started a thread indicating that low dose Naltrexone helps with phenotype 1 (of course Flugs calls it subtype 1). If you read the entire thread Flugs also takes propranolol (10 mg 3 times daily ), uses IPL (post no 29), however, in post no 49 Flugs writes, "I’ve also dropped all the meds I have tried in the past, none of which seemed to help much anyway... at least not enough for me to want to do something to my heart in order to help my face. So all I’m taking now is LDN and a tablesppon of apple cider vinegar every day." Flugs reports at post no 80, "On the down side though - I have to confess that i have had a few (pretty minor) flushes in the past two or three weeks. Almost always for no apparent reasons. It may still be post IPL recovery, last one was a month ago.. but IPL recoveries used to be waaaayyy worse, so if this is all I get I'm fine with that. I confess I have also been dabbling with (very mild) mandelic acid of late - I think I was overdoing it - Ive dialled back." So Flugs is still trying some other treatments along with LDN. In post 99 he mentions his 12th IPL treatment.  At post no 112 Flugs writes, "I am still prone to flushing a little when I get too warm - and also (oddly) when I am trying, and failing, not to fall asleep, such as late at night in front of the tv (that’s always made me flush.. does that happen with anyone else!?) when I say “flushing a little” I mean that my cheeks get red and feel warm, but I can take it down pretty much instantly by cooling them (fan, water spray etc) in some way. Even if I were to leave them be they would go down themselves within a few mins... compare that to the sometimes 12 hour long painful flushes I got when the rosacea arrived two years ago." Judworth who suffers from Neuropathic Rosacea (has lots of posts) reports in the same thread Flug started mentioned above about his experience taking LDN, "Since taking LDN I am cautiously happy to report that I haven't had any facial nerve pain, I still get the warm room flush, but my face is less reactive in general, even after a spell on the computer (which always gave me an element of activity even if it wasn't a full-blown flush)." At post no 117 Judworth writes, "LDN has been a god-send for me, not only calming the skin, stopping my facial nerve pain and halting the burning sensation in my mouth caused by lichen planus, I feel it is somehow re-booting my faulty immune system!" The low dose Naltrexone is usually starting out at 1 mg and gradually increasing to 4.5 mg. Flugs insists that taking more than this won't work (go through his thread which has many other users reporting success with what they call LDN).  You may want to show your doctor this pdf:  Low-dose Naltrexone (LDN) Fact Sheet 2014 LDN Research Trust LDNNow
    • image courtesy of IMDB Canadian Egyptian actress Christine Solomon has rosacea. She is reported as stating, "I purchased acne products off the shelf, and that turned out to be a big mistake! My cheeks became inflamed because of the ingredients in those products, and my condition worsened. That’s when I consulted a dermatologist for the first time, and he diagnosed me with rosacea at the age of 14 years old." Ms Solomon is the 2018 spokesperson for the Acne and Rosacea Society of Canada’s Rosacea Awareness Campaign. Canadian Egyptian Actress On Rosacea, Acne and Rosacea Society of Canada
×