Jump to content
  • Welcome to the Rosacea Research and Development Institute [RRDi] official web site. The RRDi is a 501 (c) 3 non profit organization. If you suffer from rosacea you are a rosacean. Join us to find the cure. 

    We are rosaceans. Our non profit organization for rosacea patient advocacy web site is a digital data repository of rosacea information. You can add more information to our web site by joining and posting in our member forum becoming a part of 'finding the cure' for rosacea if you join. Our goal is 10,000 members. You can help us reach our goal by joining

    Where to Begin Your Search
    About Us • What Causes Rosacea? • What Should I Ask My Physician?Rosacea NewbiesFamous RosaceansRosacea in the NewsTapatalk • Contact us
    Suggest you read our FAQs for at least a half hour. After that browse our member forum for another half hour. 

    What is Rosacea?
    Rosacea is a chronic and sometimes progressive disorder of the face, characterized by some or all of the following symptoms:

    Extremely sensitive facial skin with blushing, flushing, permanent redness, burning, stinging, swelling, papules, pustules, broken red capillary veins, red gritty eyes (which can lead to visual disturbances) and in more advanced cases, a disfiguring bulbous nose. Men and women of all ages can be affected, with over 415 million estimated rosacea sufferers worldwide

    "Rosacea is probably a collection of many different diseases that are lumped together inappropriately." Zoe Diana Draelos, MD. 
    Dr. Draelos is a member of the ROSIE [ROSacea International Expert] Group that says the subtype classification of rosacea is controversial. Dr. Draelos is also a member of the RRDi MAC. Just because you have a red face might mean you have another skin condition instead of or with rosacea, since other skin conditions may co-exist with rosaceamimic rosacea or you might have a rosacea variant (a dozen variants to differentiate).  

    "Rosacea is a multifactorial, hyper-reactivity, vascular and neural based disease with a broad range of facial manifestations where normal vasodilation is greater and more persistent and involves an autoimmune component of microscopic amounts of extravasated plasma induce localized dermal inflammation that may induce repeated external triggers, vasodilation, telangiectasias, redness with eventual fibrosis and hypertrophic scarring of the dermis." Sandra Cremers, M.D., F.A.C.S., RRDi MAC Member.

    If you note, there are different definitions of what constitutes rosacea which is common. Clarity with phenotypes (see below) helps in a differential diagnosis. 

    Phenotypes
    In November 2016, the RRDi endorsed the phenotype classification of rosacea which was announced by the ROSCO panel as a better approach of diagnosising rosacea than using subtypes.

    Rosacea Differential Diagnosis and Misdiagnosis
    Your physician should differentiate rosacea from a plethora of other skin conditions. If you need photos of rosacea click here.

    Sometimes rosacea is misdiagnosed.

    Treatment
    'There are a number of topical, oral and systemic treatments available. Yet, treatment for rosacea remains difficult." Expert Opinion Pharmacotherapy 

    “There’s no one treatment that’s going to work for everybody, but we evaluate each patient individually and try to select the treatments from our armamentarium that we think will be the simplest and safest for long-term control.” John Meisenheimer, MD, Orlando, The City's Magazine

    ""Ultimately, rosacea is a subjective and entirely individual experience." Rosacea: Beyond the visable

    Cause of Rosacea
    No one really knows what causes rosacea and there are a number of theories for your consideration. Our latest article on this subject, Rosacea Theories Revisited is worth your time to consider. 

    What will the RRDi Do For Me?
    You can view the list of prescription treatments prescribed for rosacea. There is a list of non prescription treatments for rosacea to consider. We have an affiliate store dedicated to rosacea books, treatments and odd and ends. You can browse our public member forum and learn about rosacea. The digital medical revolution can assist you in your search for a treatment to improve your condition. Your rosacea is an individual case and you need to find what treatment will work for your rosacea and not a treatment aimed at the masses. Individuals can come together and share data, using collaboration tools that the RRDi offers for free. If you have the volunteer spirit and want to become part of this innovative non profit, learn how you can volunteer and be part of this digital medical revolution. You can post in our member forum if you join and register simply with an email address. If you have concerns regarding your privacy, please consider this post.

    Once you join you have a number of tools to collaborate with other members. You can create your own rosacea blog, with easy step by step directions on how to do this. Our Gallery application lets members share photos and videos with the community. Volunteers who contribute their time and energy may receive a free G Suite account through a generous contribution of Google, one of our sponsors.  

    You may receive a free ebook, Rosacea 101: Includes the Rosacea Diet as a gift from the founder/director if you mention in your registration application that you want the free ebook (write in the volunteer box you want the free ebook).

    You can post in our member forum about your rosacea experience. However, we want real members, not spammers, hackers or trolls. We provide a safe, secure forum for our members, so our membership registration is very secure requiring your accepting our terms for membership.

    Our 2016 Rosacea Survey is completed and available for public viewing.  You may review a list of our education grants. Finally, ask not what the RRDi can do for you, ask.....

    What Can You Do for the RRDi?
    Your joining and registering with our organization will increase our membership. All that is required to join is an email address (your email address is private and members never see your email address nor does the RRDi give your private email address out to anyone). Our goal is to reach a membership of 10,000 members. Think about that, 10,000 rosacea sufferers joined together as a non profit organization and you are member. We need you to join to help us reach this goal!

    The RRDi is a volunteeer member driven organization and invites rosacea sufferers to become involved. Volunteering is the force that drives the organization and is an integral spirit of the RRDi philosophy. The RRDi warmly invites rosacea sufferers to participate in this non profit which you can become a part of. You are not required to volunteer when you join, since we still want you to join even if you can't volunteer. If all you can do is become a member, that will increase our membership which is helpful in itself. So if you can volunteer, let us know on the application. Please join

    Please carefully read the next subheading on how to join and if you have concerns about privacy. 

    How to Join
    Members may now join with just an email address and a display name (your first and last name is no longer required to be a non voting member and you can set up a anonymous or cryptic display name so that no one knows who you are). To post in our Member Forum or submit articles for publication you must register to join to become a member. The RRDi no longer requires that you provide us with your contact info and mailing address to be a non voting member. However you still need to agree to our policies, rules, etc., since you become a member of the RRDi whether a voting member or not. If you want to vote, simply include all the profile contact fields. We have over 1000 members who are voting members, so we have plenty. It is your choice if you want to vote or not. 

    If you need assistance contact us. Our volunteers will be happy to assist you. 

    Your privacy is our utmost concern and we will take precautions to ensure your privacy will never be violated. Our Privacy Policy is solid. If you have concerns regarding your privacy, please consider this post.

    Once you have joined you can post in our secure members forum which will allow you to post questions to the Medical Advisory Consultants (MAC) and to fellow members or to submit articles for our journal. Yes, members may have an article published on our web site or in our journal. You may receive a free G Suite account with our organization if you have the volunteer spirit. 

    Charter and Mission Statement
    The Charter of the Corporation states the purpose and Mission Statement which clearly outlines the goals of our non profit corporation. If you are interested in the history of how and why this non profit organization was formed click here for more information

    Of course there are expenses to keep this non profit organization going. Any donation you give will assist us to continue to keep this web site going, publish our journal, and sponsor education grantsMahalo for your donation. even if it is small. Every dollar helps us keep going.  

    The RRDi is registered at GuideStar

    guidestar_logo-230x71.png
    guidestar2018goldseal.png

  • Recently Browsing   0 members

    No registered users viewing this page.

  • Who's Online   0 Members, 0 Anonymous, 2 Guests (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      1,219
    • Most Online
      499

    Newest Member
    Roubaix
    Joined
  • Forum Statistics

    • Total Topics
      4,024
    • Total Posts
      5,160
  • Posts

    • The NRS Weblog reports on October 22, 2018, "Over the course of nearly two decades since the National Rosacea Society (NRS) issued its first research grants, this program has fostered dramatic strides in the understanding of rosacea, and has now awarded more than $1.5 million to date. Funded exclusively by donations from individuals, the NRS research grants program was established in 1999 to provide support for medical research into the potential causes and other key aspects of this poorly understood disorder that may lead to improvements in its treatment, care and potential cure." [1] [bold italics added] The report then notes some of the notable studies funded with more than $1.5 million dollars, which some of these are quite good. The NRS states clearly on this blog report that all the money spent on these studies came from individual donations from members of the NRS. However, let's really look at the math on this. The RRDi has kept an accurate record of all the donations from 1998 thru 2016 and the total amount reported donations to the NRS amounts to $13,898,646. [2] The total amount reported by the NRS spent on rosacea research studies during this same period amounts to $1,403,031, which is a difference of about $96,969. Ok, I grant you might minimize this difference but $96K to the RRDi is a big deal. If the RRDi had $96K we would spend 90% on rosacea research studies.  But what is a even a bigger deal is that the NRS reports over this same period that only 10.09% of the amount donated to the NRS comes from public support (what the NRS reports in the weblog articles as 'exclusively by donations from individuals). So what does does the math now reveal? $1,402,378.38 is the actual amount reported by the NRS to the Internal Revenue Service. That is a difference of $97K, which closer to the same amount in the previous paragraph. [2] Ok, just a $1K difference, but it helps confirm the math.  So what's the big deal you ask? Go back and look at the total amount of donations reported by the NRS during this time period. Yes, almost $14 million. Look again at how much money was spent on rosacea research studies? Actually $1.4 million. So how much money of the TOTAL donations was spent on rosacea research? You do the math. Ok, I will do it for you: 10%. So for every dollar donated to the NRS ten cents is spent on rosacea research.  One might ask, where did the other 90% of the donations come from when only 10% comes from public support? If you look on the NRS website home page, scroll down till you read, "Maintenance of this website in 2018 is supported by unrestricted educational grants from the following companies so that individual donations can be used to fund research" and notice the list of companies who sponsor the NRS, pharmaceutical corporations with a vested interest in rosacea. However, the NRS reports that all the rosacea research studies are "Funded exclusively by donations from individuals." So what are these educational grants funded by these pharmaceutical companies?  There are none listed that are sponsored by any pharmaceutical companies shown on the NRS website. Why not ask the NRS?  Better yet, why not ask the NRS for a copy of the Form 990 for 2017 that you are entitled to review yourself and see where all the money is spent. Yes, it takes time to read a Form 990 but you can get the gist of the entire report in about a twenty minute review. For example, here is a review of the 2016 Form 990.  If it is really true that the public support reported amounts to $1.4 million, just think about what rosacea research could have been accomplished if more money was spent on rosacea research rather than the 10 percent the NRS spent of its total donations? Say 20 percent?  Or what about 50%? How much should a non profit organization for rosacea spend on rosacea research of its total donations?  If you are meditating on all this, you might ask, where did most of the 90 percent of the donations go to? What was most of the donations the NRS received over this period spent on?  The answer is two private contractors, that are owned by the president of the NRS, Sam Huff. And the most surprising thing about all this is that members of the NRS don't care how the NRS spends its donations and keeps giving the NRS donations. I still haven't figured out why the members of the NRS keep donating but it is obvious they love the NRS and how it spends its donations. For more info.  End Notes [1] NRS Research Grants Program Drives Key New Discoveries
      Posted: 10/22/2018, NRS Weblog [2] NRS Form 990 Spreadsheet 1998 thru 2016
    • The NRS has funded a study that differentiates the difference between Subtype 1 (erythematotelangiectatic) rosacea and Telangiectatic Photoaging (TP), a rosacea mimic which is a condition with visible blood vessels from sun damage. The NRS report on this subject states, "mast cell tryptase, an enzyme released by mast cells that is associated with inflammation, was found to be four times higher in subtype 1 rosacea skin than in TP skin, and 25 times higher than in the control group. Rosacea skin also showed significantly more evidence of matrix remodeling, a skin damage process leading to greater vasodilation." [1] It should be noted that the subtype classification of rosacea has been improved with the new phenotype classification so that Subtype 1 has been split into two distinct phenotypes, Phenotype 2 and Phenotype 3.  End Notes  [1] New Study Defines Rosacea and Damage From the Sun
      Posted: 06/15/2015, NRS Weblog
    • A more recent study concludes:  "Increased caffeine intake from coffee was inversely associated with the risk of incident rosacea. Our findings do not support limiting caffeine intake as a means to prevent rosacea. Further studies are required to explain the mechanisms of action of these associations, to replicate our findings in other populations, and to explore the relationship of caffeine with different rosacea subtypes." See end note 3 in the first post of this thread for the source. 
    • Related Articles The Spectrum and Sequelae of Acne in Black South Africans Seen in Tertiary Institutions. Skin Appendage Disord. 2018 Oct;4(4):301-303 Authors: Dlova NC, Mosam A, Tsoka-Gwegweni J Abstract
      Introduction: Acne is a chronic disorder of the pilosebaceous unit affecting all ethnic groups. It remains in the top 5 skin conditions seen worldwide. The paucity of data characterizing acne in South African Blacks led us to the documentation of types and sequelae of acne.
      Methods: This is a cross- sectional study describing the spectrum and variants of acne in 5 tertiary hospitals in the second most populous province in South Africa over 3 months (January 1 - March 31, 2015).
      Results: Out of 3,814 patients seen in tertiary dermatology clinics, 382 (10%) had a primary diagnosis of acne or rosacea, forming the fourth most common condition seen. Acne accounted for 361 (94.5%); acne vulgaris was the commonest subtype at 273 (75.6%), followed by steroid-induced acne 46 (12.7%), middle-age acne 6 (1.7%), acne excoriée 2 (0.6%), and "undefined" 34 (9.4%).
      Conclusion: The observation of steroid-induced acne as the second most common variant in Black patients underlines the need to enquire about steroid use and education about the complications of using steroid-containing skin-lightening creams. Treatment of postinflammatory hyperpigmentation should be part of the armamentarium for holistic acne treatment in Blacks, as it remains a major concern even after active acne has resolved.
      PMID: 30410901 [PubMed] {url} = URL to article
    • Related Articles Comprehensive Diagnosis and Planning for the Difficult Rhinoplasty Patient: Applications in Ultrasonography and Treatment of the Soft-Tissue Envelope. Facial Plast Surg. 2017 Oct;33(5):509-518 Authors: Kosins AM PMID: 28962057 [PubMed - indexed for MEDLINE] {url} = URL to article
    • Body Piercing: A National Survey in France. Dermatology. 2018 Nov 07;:1-8 Authors: Kluger N, Misery L, Seité S, Taieb C Abstract
      BACKGROUND: There are no recent data available in France regarding body piercing (BP).
      OBJECTIVE: We examined the demographics, motivations, quality of life, cutaneous conditions, and cutaneous side effects after BP within the French population.
      METHODS: A representative sample of 5,000 individuals (aged 15 and over) from the general population responded to a survey online between April and August 2017. Data regarding demographics, BP characteristics (location, age at first piercing, hesitation, regrets, motivations, cutaneous side effects), tobacco, skin conditions (acne, contact eczema, atopic eczema, rosacea, psoriasis, vitiligo), and tattoos were collected. Respondents also filled an SF-12 quality of life questionnaire.
      RESULTS: Overall, 12% of the respondents reported at least one BP (women: 19.4%, men: 8.4%, p < 0.01). The prevalence was highest among those aged between 25 and 34 years (25.8%). Individuals with BP were more likely to smoke (p < 0.01). The most common body parts for piercings were the external part of the ear (42%), the navel (24%), the tongue (15%), and the nose (11%). Gender differences included localization (belly button and nose for women, eyebrows for men) and motivations (embellishment of the body for women, individuality and sexuality for men). A total of 33.6% of the study participants reported having skin problems after BP, primarily infection (44%). Individuals with BPs were more likely to report having contact eczema, atopic dermatitis, and acne. BP was associated with a lower mental quality of life score.
      CONCLUSION: This is the largest epidemiological study on BP in France to date. It allows us to draw a precise current snapshot of French indi viduals with BP.
      PMID: 30404090 [PubMed - as supplied by publisher] {url} = URL to article
×