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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

    • Related Articles Management of Rhinophyma with Radio Frequency: Case Series of Three Patients. J Cutan Aesthet Surg. 2019 Apr-Jun;12(2):136-140 Authors: Tambe SA, Nayak CS, Gala P, Zambare U, Nagargoje A Abstract Rhinophyma is the most common form of phymatous rosacea, typically seen in men. It may appear de novo (without preceding inflammatory changes) or occur in patients with preexisting papulopustular rosacea. It is characterized by slow, bulbous, reddish-purple, painless enlargement of lower two-third of nose with rugose peau d'orange surface resulting from the enlargement of the sebaceous glands and subcutaneous tissue, which does not resolve spontaneously. Though benign, it causes lot of cosmetic and psychological concern. Commonly used treatment modalities include debulking by surgical excision, electrosurgery, carbon dioxide laser ablation, cryosurgery, or dermabrasion. Here we report a case series of three patients with Grade 3 rosacea as per National Rosacea Society grading, treated by radio frequency with good improvement. PMID: 31413484 [PubMed] {url} = URL to article
    • Soolantra at drugs.com costs $389/30 grams    
    • Trillium. Soolantra is a 1% Ivermectin cream in the "soothing" Cetaphil like base according to a post by Galderma. The tricky bit with the 1% liquid solution is that adding it to the cream base will dilute it more so that the resulting mix is less than 1%.  If its already 1% you may actually best use the liquid solution directly onto clean skin.  Try a few drops on the palm and smooth it on the face like a thin facial serum.  The 1% liquid is the right strength to be effective already.  Let it dry.  Optionally you could apply a moisturizer like Cetaphil or whatever you prefer after the Ivermectin solution dries.  That should help eliminate the messy issues with the horse paste. As Brady says, your best bet to make a 1% mix would be to use the Ivermectin powder.  I'm not sure what the Percent strength of the powder is - if its mixed with something it might be less than 100% pure.  The percentage will impact how much Cetaphil cream to mix with the powder.  To be a match for the strength of Soolantra the ratio should dilute the powder to 1% strength when mixed with the Cetaphil. You only have to use the Soolantra once per day at night - that is when the mites are active.  So there shouldn't be any need to wear it under makeup during the day.  That may help with the makeup issue. I totally agree with you about the absurd costs.  Ivermectin has been a generic drug for quite some time and is not that expensive.  By my rough calculations Soolantra has less than $20 worth of Ivermectin per tube.  So selling it for $600+ per tube is obscene.' ElaineA
    • Trillium,  Tom Busby, SD poster extraordinare at RF, mentioned in a post on this subject at RF, "an alternative source of ivermectin, on eBay" which is ivermectin powder. I asked Tom whether this would be a good idea since it seems a lot safer to use the horse paste than have to concoct a paste with grain alcohol and his comment is, "horse paste is fairly expensive for a really tiny amount of product.... I have to assume that someone who has some experience formulating hot emulsions (oil in water) could make a non-greasy cream with this ivermectin powder." There is a formulae based upon weight how much ivermectin to use per pound of body weight.  You mention using the Cetaphil base for your concoction. Have you used Cetaphil? No issues with Cetaphil? Some have reported they cannot tolerate Cetaphil, while others just love it. We have a post explaining the 'basis for vehicle' regarding the use of Cetaphil with Soolantra that should prove illuminating to you. Some prefer the smaller amount of inactive ingredients in horse paste over using the huge amount of inactive ingredients in Cetaphil based Soolantra. There are a significant number of brands of horse paste and each one has similar but different inactive ingredients which are discussed in this thread. We have found two brands that actually list the inactive ingredients, but most brands do not list the inactive ingredients since they are not required to do so.  As for price of Soolantra have you contacted Galderma about the CareConnect program that you may qualify for?  As for the high prices pharmaceutical companies charge in the USA which is related to the medical insurance conglomerate and the universal health insurance issue, yes, it is sad that medical treatment is for the rich, similar to the way justice is given. If you are rich you definitely have an advantage in the USA for justice and medical treatment. But there are some work arounds, where philanthropic organizations help the poor with the money donated by rich benefactors but obviously not enough is given to alleviate these issues. Our non profit organization tries to help in small ways by educating Rosaceans on alternative treatments like ElaineA has done in this thread. Hopefully, you will figure out your own ivermectin solution. Are you confident that using ivermectin actually controls your rosacea? Ivermectin doesn't work for every rosacean. Which brand of horse paste 'leaves a goopy mess on your face at night' ? Have you tried using the horse paste on at night and then washing it off in the AM? Most use Soolantra this way, only use at night. Horse paste is usually only put on at night and then washed off in the AM.  Keep us posted.   
    • I have tried the ivermectin horse paste but it leaves a goopy mess on your face at night.No way to wear it under makeup either. It helps but I also use SAL3 which is a sulfur soap with salicylic acid (3%) which seems to do a better job of keeping the face clean too. I am now wanting to make my own invermectin cream that will not be such a goopy  mess. I have ordered Agrimectin Ivermectin injection 50ml at 1% which is a sterile solution on Amazon for about $28.00. I also picked up some Cetaphil moisturizing cream which is also made by Galderma the same company that makes Soolantra. I plan to mix the Cetaphil cream with the Agrimectin solution and make up my own ivemectin cream since my insurance doesn't cover Soolantra for Rosacea. Soolantra is still like about $660.00 a tube which is just ridiculous and highway robbery. I was given this Soolantra about 10 yrs ago and it was $600.00 then and I had to pay a $60.00 copay for it. Now the insurance companies are not going to pay the monster's (Galderma) game anymore with over inflated prices and I don't blame them. The more you pay them the more they get away with these insane practices. I think if we have more reasonable alternatives they will have to lower the price to get any sales. I have read where others around the world are paying so much less than the $660.00 that is price fixed in the U.S. I feel like Galderma treats American patients like their own parasites the way they have no regard for how most folks can't afford this price fixing they play on us. I also have 2ml syringes and not sure how much Agrimectin Invermectin to use with how much cream to make an effective cream for Rosacea. My dermatologist did try to send me to use www.userphil.com for Soolantra for about $70.00 a tube but this San Francisco start up has horrible reviews and even the BBB has rated them an F! Apparently on the website they used all this high profile company names that wrote articles about them but when the BBB tried to get proof on this or clarification the company never responded. The arrogance of these Silicon Valley investors is just astounding. This vacuum that this price fixing has created is attracting unsavory sharks to enter into the fray. Also if the prescription gets lost in the mail then you can't get a replacement. I know these Silicon Valley investors are smacking their lips over the idea of owning a huge market share of the 300 billion dollar online pharmacy sector business. These investors have over promised and left customers in the lurch. The reviews from customers are just horrible. I think only 54% recommended them on Hiya. A common term reviewers use is liars in regards to their experiences with this online site. I would like to make small maybe weekly batches of my own ivermectin cream if this cream can stay stable for a week. I found using the horse paste helped initially when I had a horrible outbreak but then  I found it created an environment where it wasn't as effective since you have this moist gel on your face that kind of gets all over your hair and pillows and also seems to make the Rosacea revert back a bit and not sure why that is. SAL3 seems to dry out the skin and helps it when the horse paste stops working as well. Thanks for any help you can provide in how to figure out the recipe for ivermectin cream using a liquid ivermectin solution.   
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