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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

    • And thats exactly the problem with Brevis. We have no way to check the levels of this parasite in rosacea. This study was able to check them by extracting eyelashes and found large numbers of brevis at the root. But what type of test is used to count them in the skin.  Surface tests will only count folliculorum levels and Soolantra won't have much of a problem killing them. But i have my doubts that it is able to kill brevis. 
    • Thanks Rory. Looking forward to your results. Did you see this paper about demodex brevis:  Demodex Brevis Higher Count Than Demodex Folliculorum in Cylindrical Dandruff Patients
    • Well, I think oral ivermectin should be more common as a rosacea treatment. Rosacea skin has a damaged barrier and topicals can be extremely difficult for many to tolerate. Also, topical treatments can be very slow to take effect as seen in a Galderma study of Soolantra where 30% of trial participants took up to a year to achieve clear/almost clear results. Then there is demodex brevis. A much smaller cousin of demodex folliculorum, which lives deeper in the pores. Little is known about brevis and, unlike folliculorum, it doesn't appear to exit pores at night to mate. If this is indeed the case then how do we kill it with a topical which may not penetrate the skin deep enough to reach it.  I think the horse paste is more of a hit in the States than in Europe. Its down to the crazy prescrition medication prices Americans pay, whereas in Europe Soolatra is many times cheaper. Ivermectin, as far as i know, is not water soluble. So any topical gel version of Soolantra will need one of those irritataing oil soluble excipients to disolve it. The horse paste looks like a gel but i have seen comments from people saying that it feels and looks like vaseline after applying it.  Anyway, I'll give it a couple of months and I'll post my results on the page you mentioned.
    • Actually I ran this by my dermatologist who was well aware that Rosaceans were using horse paste topically since he read about it in a journal. There are some dermatologists who are up to date with what is going on and then there are others who are in the dark. He told me that when prescribing Soolantra to his rosacea patients that about one in four patients were successful using it. He gave me a Rx for Soolantra and I tried it and I think now it was the inactive ingredients in Soolantra that irritated my skin. Galderma (or another pharmaceutical company) will probably eventually make an ivermectin gel with a very simple inactive ingredient list to compete with the horse paste that everyone is raving about. Galderma knows what is going on with rosaceans and obviously saw a slight dip in Soolantra sales due to thousands using horse paste. They know that a significant number of rosacea patients are not able to tolerate the inactive ingredients in Soolantra. 
    • Rory, thanks for clearing this up that you are taking the horse paste orally. We do have a thread dedicated to taking ivermectin orally. While many may think that taking oral ivermectin isn't a good idea, the fact is that oral ivermectin has been given to millions of people worldwide and there are long term studies on oral ivermectin in children. However, the RRDi recommends you check with your physician when embarking on this form of treatment as a precaution. It would be better you post in the oral ivermectin thread since this thread is about using horse paste topically. Thanks. 
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