Jump to content
  • Sign Up
  • rrdiLogo384x64.jpg.3cd1bd79f5d066075bdd9

    Mission Statement

    The Rosacea Research & Development Institute [RRDi] is the first non-profit organization made by rosaceans for rosacea sufferers that will collect donations for rosacea research to be performed by physicians and biomedical research scientists and includes these specific goals:

    mission_statement.png

     

     

    Goal # 1: To be the first non profit organization for rosacea patient advocacy and to find the cure for rosacea. 

    Goal # 2: To have a majority of rosaceans the right to vote who sits on the board of directors.

    Goal # 3: To make this the first rosacea specific non profit organization to utilize most of the donations for research and treatment development. This is in stark contrast to non profit organizations that spend 50% to 60% of their donations on paying their staff, board of directors, conventions for professional members or to pay private contractors for services.

    Goal # 4: To allow rosacea sufferers to guide where and how the money is spent on rosacea research and be the first non profit organization to allow rosaceans to be members of the corporation. Until June 7, 2004, the date of incorporation, there had been no other non profit organization that allowed input from rosacea sufferers.

    Goal # 5: To attain a level such that the RRDi can directly impact medical articles published on the subject, information disseminated to physicians and rosacea sufferers and apply positive pressure on the medical community.

    Goal #6: Continue to publish the Journal of the RRDi and fund all authors who contribute an article.

    Goal #7: To allow volunteer members to have a platform to voice their concerns about rosacea and to contribute information about rosacea. Our goal is 10K members. 

    For more information on how and why this non profit organization for rosacea was formed click here.

    Our Charter can be read by clicking here.

  • Member Statistics

    • Total Members
      1,281
    • Most Online
      499

    Newest Member
    Trillium
    Joined
  • Posts

    • I would like to just start out with saying you guys are just AWESOME! I am so impressed that it kind of makes me speechless. I will check all the advise that has been offered here and see what works for me. Thank you both for taking the time to respond in such a meaningful way. I have had some substantial health issues this year and I have to say it has made me more jaded about the health care templates of today. Some is good and some is just a careless conveyor belt approach. Yes I agree completely that if you are rich you can maneuver around so much of the road blocks so many greedy types are creating. Robber Barons have been around for a very long time and we have ours too. The greed is just scary and just blatant. Before it was much more under ground. Now it is done with impunity and the acceptance of this new standard is pretty shocking. It makes me beyond sad that we haven't really pushed things to benefit all. I am very naive about so much even at 63yrs old. I have had to learn to be more proactive and cautious since I am just another number and not someone to care about. After awhile you just get weary from this approach. For years I was so appalled at the way so many of my doctors just failed to give good advice or cared or knew about how to deal with all my inflammatory expressions. We should be so further along by now. That explains why so many are becoming more proactive and not defaulting to the system as much as we used. I was friends with a young intern decades ago. One thing he said always stood out for me which was completely out of character for him. I have a terrible memory but it is odd things like that, that burns into your memory where your gut knows there maybe something to what you heard but not sure what it is but you know to memorize it for the future. He said he was so surprised at how medicine really hadn't improved much. I first thought he was being overly dramatic and jumped in giving off examples where it had. But I was healthy and young at the time and really didn't understand personally what he meant by it but it still stood out for me that maybe there is more to that than I realized. Now that I am older and having to face some bigger health issues I now get what he was trying to convey. Duhhhhh He was a pediatrician and he felt overwhelmed by the lack of treatments or cures for kids. That was 35 yrs ago. Even then the press was always talking about all the improvements in medicine but it was just fluff stuff not enough of the real important stuff. Just enough to make it look like what they are doing is credible and worth hundreds of dollars to find out. Kind of like the carrot and the mule. I don't know what the answer is but I do know that not enough research is being done due to the lack of funding with worthy researchers not researchers for hire for big pharma or university professors trying to get tenure and a big payout. I wish our politicians were not owned by corporations and would really vote based on what is best for all. Even if we have the answers I don't think they have the will  to really act on it. The greed is just relentless and involved with every facet. By just experimenting on my own I found that what I put in my gut improved so many things and not one doctor even broached this topic. That made me super wary of wasting money going to them. So many times I have had asked about this or that specifically and the doctor redirects the conversation and I would come away with few answers and I am sick of that too. If you don't know then say so. I kind of realized that they don't know much and just guessing too much of the time and I am paying hundreds of dollars for this too! I avoided doctors for about 4 to 5 yrs because I lost faith in the system. Some have caused me great harm like Paxil that was handed out like candy to shut patients up and keep us out of the waiting rooms. So I am careful about just taking advice from doctors on what they think I need and make sure I am sure they are not just using me to help their bottom line. I am not alone in this thinking since I have noticed many are just fed up with their doctors and healthcare providers in the lack of real cures or help. I am also done with non profits for conditions that duplicate efforts and are not really doing much but creating jobs for people who are not really providing much in a way to get to hard answers on it all. I do think cancer is a big money maker. Many are relying on this field to bring in the big dollars which it does and I can see the conflict of interest with so much in health care. I have this amazing dentist who is finally retiring at 75 yrs old. He really cares about his patients and he has spoiled me terribly with the way he has fixed my mouth after decades of greedy dentists who didn't take the time for malocclusions. The improvements he made really had a huge impact on pain too. He says it doesn't pay dentists enough to do that work. That explains why my mouth got to such a bad state going to so many different dentists over the years. It is systemic in this sector. He is older and should have retired years ago but he loves doing what he does part time. He is master at what he does. I now understand the difference in a good dentistry and a poor approach. He has tried to mentor younger dentists but they don't listen. He is frustrated with them. He is very involved with so many helpful things also and he really is a rock star person on so many levels. Guys like him are rare and I am not looking forward to using another dentist. I think when you have experienced a healer/doctor who cares and has bothered to find better approaches and is not needing to pay for the house on the lake or ______ or paying off huge student loans. Only then can you really see the stark differences in what is and what could be. I have an adult daughter who works in healthcare in admin type of job and I try to influence her on things from a patient's stand point. On many occasions she has been shocked at how the system has failed me. To say her jaw dropped is an understatement. She didn't really understand this until she experienced it herself with me. She now makes sure she helps me when I get too weary dealing with all the B.S. this sector does to patients as much as she can. She knows it can be a mind field out there. I hope if at some time she can improve things for patients she will since she can look back at what she witnessed with me. She will know where to look for the holes in it. Plus she will know how to navigate this for herself and family in the future. Two tips I have now that I have been thru a bad health year. I will recommend that you do not fill out any feedback forms until you are completely done with the issue and have had time to reflect on it. Too many times these entities will send out surveys BEFORE you realize how bad it really was. They act like Amazon sellers who want your review before you even had a chance to use the product! These surveys help support their crappy approaches. They must know this premature feedback is better when it is submitted before you have time to reflect. Second tip is to let the clinic managers know AND corporate know when you have been treated poorly and go into detail about it. Too many times no one speaks up enough to call them out on it all and why they are losing business with their conveyor belt approaches. If nothing else . . . the bottom line does make them pay attention. If you aren't going to have your surgery with them, that brings in a lot of money, when no one gives you your test results from your biopsy then they will care. If that young doctor breezes in and out so fast and you barely have time to talk to them find another one who is listening to you. Sad but true. If a young doctor just ignores your questions and redirects the conversation or scolds you to take the heat off of them, find an older doctor who will make time for you and be honest with you. Keep looking. My daughter says she does not have any loyalty to any health care entity. Nope she bases it on the better doctors and not where they work. Trying to find them is the trick if they even exist anymore. Buy insurance that allows you to pick your doctors since it may make a huge difference when you have serious health crisis. Corporate health care is able to do more things but there is a big trade off with them buying up all the independents and my hope is there is a way to have both down the road. Not holding my breath on that one. You can't live with them and can't live without them at this point in my life. I am actually looking forward to AI doctors since maybe we can avoid pretending they care or are allowed to care due to time constraints and bottom line. Maybe better connections will be made this way? Maybe not,  like Google cars that really don't work well and are not safe. I am sure the bean counters are hoping they can use robots instead and save more money for the admins and stockholders in the future. Won't be really in my lifetime. I am so grateful for forums like this where we can connect and share what we have learned when the system continues to fail us on such a grand scale. Drug companies make more money than oil companies and that is saying a lot. If we can share and find other options maybe they will begin to realize they need to change in order to stay afloat : ) They really have a huge PR problem with folks and the stockholders will be the ones who will be holding the bag ultimately when cures really do become a common reality in so many health care conditions. Patients will have memories like an elephant and will rethink who they buy their drugs from. They will not look kindly on companies like Galderma when they recall all their abuses. The internet makes this information very findable too. The old way of dividing and conquering is a outdated approach and won't work as well. I use cannabis and am finding so many peer reviewed papers that are showing how tumor cell death is happening to many types of cancers like endometrial (Cannabinoid-induced cell death in endometrial cancer cells: involvement of TRPV1 receptors in apoptosis) and prostate (Proapoptotic effect of endocannabinoids in prostate cancer cells) cancers when cannabis is used. So the tide is turning ever so slowly. When I told one oncologist about these papers his lame response was "It is not western science." Well my dentist said I don't care where the science is from as long at it is good." Big pharma has had an easy go of it with regulations preventing research with certain drugs in order to dominate the market place with their half baked drugs. Now that patients are seeking alternatives that are working it is going to be impossible for big pharma to put the genie back into the bottle with congress et al. The states are moving the chess pieces into place for patients if nothing else in order to generate revenue. Thank you so much for responding and I hope others will find this thread of how to work around Galderma's horrible greediness with U.S. patients when it comes to Soolantra and god knows what other drugs they are over charging for. Proapoptotic effect of endocannabinoids in prostate cancer cells.pdf
    • 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    
×
×
  • Create New...