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Guide

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  1. "In fact, rosacea might be underreported and underdiagnosed in populations with skin of color because of the difficulty of discerning erythema and telangiectasia in dark skin. The susceptibility of persons with highly pigmented skin to dermatologic conditions like rosacea, whose triggers include sun exposure, is probably underestimated. Many people with skin of color who have rosacea might experience delayed diagnosis, leading to inappropriate or inadequate treatment; greater morbidity; and uncontrolled, progressive disease with disfiguring manifestations, including phymatous rosacea." Global epidemiology and clinical spectrum of rosacea, highlighting skin of color: Review and clinical practice experience Andrew F. Alexis MD, MPH, Valerie D. Callender MD, Hilary E. Baldwin MD, Seemal R. Desai MD, Marta I. Rendon MD, Susan C. Taylor MD Journal of the American Academy of Dermatology Volume 80, Issue 6, June 2019, Pages 1722-1729.e7
  2. In 2004, it has been stated that "The economic burden of skin disease on the US healthcare was approximately $96 billion in 2004. [1] "In 2013, more than 85 million Americans were seen by a medical professional for skin diseases. The United States healthcare system alone is estimated to spend approximately 75 billion dollars annually to treat skin diseases. Additionally, the prevalence of skin disease increases to almost 50% in Americans 65 years of age or older). Moreover, it is estimated that the population over the age of 65 will almost double in the United States in the next 30 years, leading to an inevitable increase in annual healthcare costs for skin disease treatment." [2] This expenditure is on all skin conditions. A "Data Bridge Market Research analyses that the rosacea treatment market, which was USD 1.8 billion in 2022, would rocket up to USD 2.6 billion by 2030 and is expected to undergo a CAGR of 6.1% during the forecast period of 2023 to 2030." - Global Rosacea Treatment Market, DBMR How much is spent on rosacea in the USA? How much did you spend on rosacea the past year? Post your comment in this thread. Rosacea How many of those billions are spent on rosacea? As the above figures shows it is in the millions of dollars. "In 2013, the costs associated with the treatment and lost productivity among those who sought medical care for rosacea was $243 million." [2] Between 2002 and 2005, for an individual patient, "Of the total healthcare costs, annual rosacea-related expenditures were $276; approximately 70% of rosacea-related expenditures were due to prescription drugs. [3] In 2013, "The treatment of rosacea incurred primarily pharmacy rather than medical costs. The median annual pharmacy costs, by type of therapy, were: $285 for combination therapy $142 for a topical medication $63 for an oral antibiotic agent." [4] In 2014, the NRS states, "The lack of health insurance or the amount of the required co-pay kept 47 percent of the survey respondents from obtaining medical care for their rosacea at some point. And 56 percent reported they had paid out-of-pocket for a rosacea-related medication or procedure not covered by their insurance policy. Of those answering the survey, the amount paid out of pocket was less than $100 for 33 percent, between $100 and $500 for 35 percent, between $500 and $1,000 for 12 percent and greater than $1,000 for 11 percent." [6] End Notes [1] Bickers DR, Lim HW, Margolis D, et al; for the American Academy of Dermatology Association, and the Society for Investigative Dermatology. The burden of skin diseases: 2004 a joint project of the American Academy of Dermatology Association and the Society for Investigative Dermatology. J Am Acad Dermatol. 2006;55: 490-500. [2] Aquaporin-3 in the epidermis: more than skin deep Wendy B. Bollag, Lorry Aitkens, Joseph White, and Kelly A. Hyndman Am J Physiol Cell Physiol. 2020 Jun 1; 318(6): C1144–C1153. Published online 2020 Apr 8. doi: 10.1152/ajpcell.00075.2020 [3] SKIN CONDITIONS BY THE NUMBERS, AAD [4] Healthcare utilization and costs of patients with rosacea in an insured population Michael Romanowicz, Judith J Stephenson, James Q Del Rosso, Greg Lenhart Dermatol. 2008 Jan;7(1):41-9. Healthcare utilization and costs of patients with rosacea in an insured population [5] Cost and Drug Utilization Patterns Associated with the Management of Rosacea Caroline Helwick, Medical Writer Am Health Drug Benefits. 2013 Nov-Dec; 6(9): 583–584. [6] New Survey Shows Insurance Covers Medication For Most, NRS
  3. PubMed RSS Feed - -Successful Treatment of Granulomatous Rosacea by JAK Inhibitor Abrocitinib: A Case Report If you are taking vandetanib read this: PubMed RSS Feed - -Dark perifollicular macules and granulomatous rosacea secondary to vandetanib
  4. "Trichoscopy is a method of hair and scalp evaluation and is used for diagnosing hair and scalp diseases. The method is based on dermoscopy." [1] "In many cases the combination of clinical examination and trichoscopy is sufficient for establishing the correct diagnosis....The most characteristic features of scalp rosacea are perifollicular scaling and arborizing vessels." [2] Why I like trichoscopy? Professor Lidia Rudnicka End Notes [1] Trichoscopy, Wikipedia [2] PubMed RSS Feed - -Differential diagnosis of red scalp. The importance of trichoscopy image courtesy of Wikipedia Commons
  5. "Conclusions Patients with rosacea seem to have increased risk for depressive and anxiety symptoms also in general population. Physicians treating patients with rosacea should pay more attention to the psychosocial health of patients." Association of rosacea with depressive and anxiety symptoms: a general population study
  6. Guide

    Brady's Blog

    My most recent regimen is taking vitamins, minerals, supplements, and homeopathy treatment prescribed from an acupuncturist in Rome, GA, Howard Elrod. I also use Azelaic Acid Gel, 15%, about three to six times a month. Occasionally I also use the ZZ cream. My rosacea is controlled, but when I go off my Rosacea Diet, it flares up.
  7. Due to a generous donation from a member we have opened up the RRDi website to the public (guests) who can now browse our rosacea topics and deep dive into rosacea research since the rosacea data is extensive. Only subscribers and volunteers may post. We encourage rosaceans to join the RRDi and show your support by subscribing and/or posting. If you volunteer to post and remain an active member we waive the subscription fee. Learn more.
  8. We have opened our website out to the public again so that guests can browse 95% of our rosacea data. Only members who subscribe or volunteer can post. Show your support with a subscription or volunteer.
  9. Guide

    Final Appeal

    Due to a generous donation we have opened up the website and most of the forums to guests who can now access free rosacea information. Subscribers (members) are allowed to post, guests can only view and read topics.
  10. Guide

    Final Appeal

    Why do you think not one of our members posts anymore? We do have a few active subscribers and posts are just not happening. Could one of our subscribers please give an opinion why posts are not happening in our guest or member forum? We opted for the subscription service for our non profit organization since the only other options are to provided totally free information with or without advertisements. We cannot afford to give free rosacea information as we did for years since donations are not coming in. We prefer not to have advertisements on our website as a source of income to keep our non profit organization going. The website is are largest expense. If we don't get enough subscribers or donations, we will be closing down this non profit for rosacea which is the only patient advocacy, grassroots non profit for rosacea that is legally a 501 c 3 non profit organization recognized by the IRS and the states of Alabama and Hawai'i. Please consider giving your thoughtful post.
  11. Welcome to the RRDi. Are you a registered nurse and have rosacea? Are you willing to volunteer for our non profit?

     

  12. Most, if not all of the rosacea research being done is being funded by pharmaceutical companies or what is called the skin industry who have a vested interest in rosacea. The only non profit organizations for rosacea doing any rosacea research are the NRS and the AARS (possibly others) who clearly state that on their financial reports that they are heavily funded by pharmaceutical companies that offer rosacea prescription treatments or cosmetic companies offering non prescription treatments for rosacea. These non profits, as well as any rosacea research, or any rosacea research is funded by the skin industry. If you can find rosacea research funded by independent sponsors who have no affiliation with the skin industry, refer to this rosacea research and list it. The skin industry includes not only pharmaceutical companies that offer rosacea treatments but also the cosmetic companies that offer over the counter treatments for rosacea. Science is assumed to be researched in integrity, after all it is science. "Science is a systematic endeavor that builds and organizes knowledge in the form of testable explanations and predictions about the universe." [1] Research is the "creative and systematic work undertaken to increase the stock of knowledge". [2] Integrity is "the practice of being honest and showing a consistent and uncompromising adherence to strong moral and ethical principles and values." [3] While most science research is without question done in integrity, there is a small unknown percentage of dark science worth investigating that results in retractable published research papers due to fraud or other data misinformation. [4] The Rosacea Research & Development Institute [RRDi] was formed for the purpose of engaging in novel rosacea research that rosacea sufferers want done which is totally in contrast to the current rosacea research being done by the skin industry. For example, if 10K members of the RRDi each donated a dollar and decided what should be researched on rosacea, this non profit organization could actually engage in a different direction than how the skin industry does their research for their own agenda. While we appreciate any rosacea research being done, it would be incredible if enough rosaceans got together and actually funded their own rosacea research. Are you in? Join the RRDi. End Notes [1] Science, Wikipedia [2] Research, Wikipedia [3] Integrity, Wikipedia [4] The Truth Police, BBC
  13. Hey Fraziertown, welcome to the RRDi. Can you post something about what concerns you with your rosacea? We are here to help. 

  14. Most Viewed FAQs List Guide • Please note: If you click and receive a message that 'you do not have permission to view" that means you need to Join the RRDi to View ($2 minimum subscription). Maybe you have some of the same questions and want to do some research. That is what the RRDi is all about. Below are the FAQs in the order of the most views as of February 2021: Is this rosacea? By far the most frequently asked question on the internet and on the RRDi website. Are there any Oracea Anecdotal Reports? (New FAQ) Answer shows 81.6K views What about Mirvaso for rosacea? (New FAQ) Answer shows 23.6K views What is demodectic rosacea? (New FAQ) Answer shows 23.2K views What is the most viewed rosacea regimen on the RRDi website? (New FAQ) Answer shows 19.7K views What about Isotretinoin for Rosacea? (New FAQ) Answer shows 18.2K views Is Carbohydrate Essential For Human Survival? (New FAQ) Answer shows 16.4K views What about sugar and rosacea? (New FAQ) Answer shows 14.8K views What is Horse Paste for Rosacea? (New FAQ) Answer shows 13.5K views What about researching diet/lifestyle and rosacea? (New FAQ) Answer shows 13.4K views What does a dietician nutritionist have to say about rosacea? (New FAQ) Answer shows 13.1K views What is Steroid Rosacea? (New FAQ) Answer shows 12.1K views Why Form Another Non Profit Organization For Rosacea? (New FAQ) Answer shows 11.4K views Do Rosaceans Suffer from Nutritional Deficiencies? 959 views in FAQs (The answer shows 10.8K views) What is Seborrheic Dermatitis? (New FAQ) Answer shows 10.3K views What should a newbie rosacean learn about rosacea? (New FAQ) Answer shows 9.6K views What Prescription and Non Prescription Flushing Avoidance Treatments are there? (New FAQ) Answer shows 9.2K views What are the latest theories on the cause of rosacea? (New FAQ) Answer shows 9.1K views What about Antibiotic Resistance, Bacterial Overgrowth, Side Effects? (New FAQ) Answer shows 8.6K views Can Rosacea Go Into Remission? 7.5K views What rosacea trigger factors are there? (New FAQ) Answer shows 7.5K views What about NSAIDs For Rosacea? (New FAQ) Answer shows 7.4K views What is Oracea for rosacea? (New FAQ) Answer shows 7.2K views Does Yogurt Or Liver Trigger Rosacea? 3.1K views in FAQs (The article with the answer shows 7.2K views) Are there any Doxycycline Anecdotal Reports? (New FAQ) Answer shows 7.1K views Is the Subtype Classification Of Rosacea Controversial? (New FAQ) Answer shows 6.8K views What is Keratosis Pilaris Rubra Faceii (KPRF)? (New FAQ) Answer shows 6.6K views Do You Have A Gut Feeling About Your Rosacea? (New FAQ) Answer shows 6.5K views What full coverage make up foundation is for rosacea? (New FAQ) Answer shows 6.5K views) How do you make a home made ivermectin cream? (New FAQ) Answer shows 6.5K views) What about aspirin for rosacea? (New FAQ) Answer shows 6.4K views) Is Carbohydrate A Rosacea Trigger? (new FAQ) Answer shows 6.1K views What is Periorol Dermatitis? (New FAQ) Answer shows 6K views What cosmetics are there for rosacea? (New FAQ) Answers show 5.9K views What is the Innate Immune Response Disorder theory on rosacea? (New FAQ) Answers show 5.7K views Are there any Anecdotal Reports of Carbohydrate and Sugar Rosacea Trigger Avoidance? (New FAQ) Answers show 5.7K views Is Coffee A Rosacea Trigger? 5.6K views How is a Differential Diagnosis Of Rosacea Obtained? (New FAQ) Answer shows 5.6K views What is Keratosis Pilaris Rubra Faceii? (New FAQ) Answer shows 5.6K views Is Rosacea A ‘Complicated Diagnosis Path’ And Mysterious Disorder? (New FAQ) Answer shows 5.4K views What Sugars Should I Avoid to Control My Rosacea? (New FAQ) Answer shows 5.4K views What is the Ketamine 0.5% and Amitriptyline 1% Treatment for Rosacea? (New FAQ) Answer shows 5.4K views What about IBS and Rosacea? (New FAQ) Answer shows 5.4K views What is Gram-Negative Folliculitis? (New FAQ) Answer shows 5.3K views What is Neurogenic Rosacea? (New FAQ) Answer shows 5.3K views What about researching Gene therapy & Isolation of Rosacea Genes? (New FAQ) Answer shows 5.3K views What Should I Ask My Physician? 5K views What about Soolantra for rosacea? (New FAQ) Answer shows 5K views Does Vitamin B Complex Trigger Rosacea? 4.9K views What is Rosacea LTD-IV? (New FAQ) Answer shows 4.9K views What diet triggers rosacea? (New FAQ) Answer shows 4.9K views Is Lamb's Quarters A Rosacea Trigger? (New FAWQ) Answer shows 4.8K views What Is The World Wide Number Of Cases Of Rosacea? 4.6K views What is Telangiectasias (Phenotype 3)? (New FAWQ) Answer shows 4.6K views What is Granulomatous Rosacea? (New FAWQ) Answer shows 4.5K views What are some Treatments for Demodex Skin Mites? (New FAQ) Answer shows 4.4 views What is ZOSSO (aka ZZ Cream)? (New FAQ) Answer shows 4.4 views What is Rosacea Fulminans? (New FAQ) Answer shows 4.3 views What is the Helicobacter Pylori Theory in Rosacea? (New FAQ) Answer shows 4.3 views What about Zeloglin for rosacea? (New FAQ) Answer shows 4.3 views Rosacea or Demodex, Which Came First? (New FAQ) Answer shows 4.1 views What two rosacea mimics are called PF? (New FAQ) Answer shows 4.1 views Can You Get A Diagnosis For Rosacea On The Internet? 4K views What about SIBO and Rosacea? (New FAQ) Answer shows 4K views What are some Natural Treatments For Rosacea? (New FAQ) Answer shows 3.9K views Does IPL Kills Demodex Mites? (New FAQ) Answer shows 3.9K views What anti-flushing drugs for rosacea are there? (New FAQ) Answer shows 3.9K views What about oral ivermectin for Rosacea? (New FAQ) Answer shows 3.7K views What about red clover for rosacea flushing? (New FAQ) Answer shows 3.7K views What is the GPSkin® Barrier Device for Rosacea? (New FAQ) Answer shows 3.6K views Does Aspirin Help for Rosacea Flushing? (New FAQ) Answer shows 3.6K views What about Psychology and Rosacea? (New FAQ) Answer shows 3.6K views What about low gastric acid and rosacea? (New FAQ) Answer shows 3.6K views What is an elimination diet? (New FAQ) Answer shows 3.5K views Is there more information on sugar and rosacea? (New FAQ) Answer shows 3.5K views How can I avoid blushing? (New FAQ) Answer shows 3.5K views What Is The Rosacea Butterfly Or T Zone? 3.4K views If My Rosacea Is Severe What Treatments Are Available? 3.4K views What is the difference between a Papule, Pustule, Pimple, Comedo, Lesion, Cyst? (New FAQ) Answers shows 3.4K views What is Pyoderma Faciale? (New FAQ) Answers shows 3.4K views What is Dr. Dray Anti-Redness Regimen? (New FAQ) Answers shows 3.4K views Is rosacea caused by bacteria? (New FAQ) Answers shows 3.4K views Is Rosacea Triggered By A Vitamin B Complex Supplement? (New FAQ) Answers shows 3.4K views What Causes Rosacea? 3.3K views (New FAQ) Answer shows 3.3K views What is Argan Organics anti redness + rosacea cream? (New FAQ) Answer shows 3.3K views Is Rosacea Caused by Genetics? (New FAQ) Answer shows 3.3K views What about Sodium Sulfacetamide - Sulfur for rosacea? (New FAQ) Answer shows 3.2K views What are some rosacea rare flareups? (New FAQ) Answer shows 3.2K views Is Sugar A Rosacea Trigger? 3.1 views What is the Gold Standard for Rosacea Treatment? (New FAQ) Answer shows 3.1K views What about Lutein with Zeaxanthin for Rosacea? (New FAQ) Answer shows 3.1K views What about metronidazole and rosacea? (New FAQ) Answer shows 3.1K views What about flushing and rosacea? (New FAQ) Answer shows 3.1K views Is Flushing Rosacea? 3K views Does Rosacea Progress In Stages? 3K views Do Acne Treatments Irritate Rosacea? 3K views What is Erysipelas? (New FAQ) Answer shows 2.9K views What about Immunosuppressants for rosacea? New FAQ) Answer shows 2.9K views What Is A Rosacea Trigger? 2.8K views What is the difference between a Variant, a Subtype and a Phenotype? New FAQ) Answer shows 2.8K views What is Gastrointestinal Rosacea [GR] (aka, Gut Rosacea)? (New FAQ) Answer shows 2.8K views Does a honey mask improve rosacea? (New FAQ) Answer shows 2.8K views What about Cathelicidin Peptide LL-37 and Vitamin D3 in rosacea? (New FAQ) Answer shows 2.8K views Is Rosacea Misdiagnosed? (New FAQ) Answer shows 2.7K views What is Erythromelalgia? (New FAQ) Answer shows 2.7K views What is the history of ivermectin? (New FAQ) Answer shows 2.7K views What is Lupoid Rosacea? (New FAQ) Answer shows 2.6K views Are Migraine Headaches Related To Rosacea? 2.5K views Can a doctor diagnose rosacea in five minutes or less? (New FAQ) Answer shows 2.5K views What is Eczema (Atopic Dermatitis)? (New FAQ) Answer shows 2.5K views What is Rosacea Conglobata? (New FAQ) Answer shows 2.5K views What is the Angiogenesis & VEGF theory on rosacea? (New FAQ) Answer shows 2.5K views How can I volunteer for the RRDi? (New FAQ) Answer shows 2.5K views Do any of the royal family in the UK have rosacea? (New FAQ) Answer shows 2.5K views Is Lupus a rosacea mimic? (New FAQ) Answer shows 2.4K views What is ProSkin Rosacea Natural Skin Cream by Mama Nature? (New FAQ) Answer shows 2.4K views What is Azelaic Acid for rosacea? (New FAQ) Answer shows 2.4K views Is Sugar Addictive? (New FAQ) Answer shows 2.4K views Has anyone committed suicide because of blushing? (New FAQ) Answer shows 2.4K views Is Flushing Rosacea? 2.4K views When posting on the RRDi website how can I balance Anonymity and Transparency? (New FAQ) Answer shows 2.4K views What rosacea panel recommended the phenotype classification? (New FAQ) Answer shows 2.4K views Can You Self Diagnose Rosacea? 2.3K views What is the X Factor in Rosacea? 2.3K views What is Glandular Rosacea? (New FAQ) Answer shows 2.3K views What is Low Dose Naltrexone for rosacea? (New FAQ) Answer shows 2.3K views Is Perioral Dermatitis a rosacea variant? (New FAQ) Answer shows 2.3K views What is Dermatomyositis? (New FAQ) Answer shows 2.3K views What does Cathelicidin have to do with rosacea? (New FAQ) Answer shows 2.2K views Does a vacation to the South Pacific which includes snorkeling improve rosacea? 2.1K views What If I Don't Want To Lose Weight Or I Need Carbohydrate For Athletics? 2.1K views What about LED for rosacea? (New FAQ) Answer shows 2.1K views What about Antibiotics For Rosacea? (New FAQ) Answer shows 2.1K views What about Rhofade for rosacea? (New FAQ) Answer shows 2.1K views How do you use the RRDi FAQs? 2.1K views What is the Autoimmune Protocol Diet? (New FAQ) Answer shows 2.1K views Will a Humidifier Help Rosacea? 2K views Are there any Demodex Mite Videos? (New FAQ) Answer shows 2K vews What is the difference between a rosacea flare up and flushing? 2K views What is the History of Demodectic Rosacea? (New FAQ) Answer shows 2K views What about ETS and rosacea? (New FAQ) Answer 2K views Is The Lymphatic System Involved With Rosacea? 1.9K views What is an Alternative to Soolantra's (Ivermectin) High Cost? (New FAQ) Answer shows 1.9K views What is Tranexamic Acid Solution for rosacea? (New FAQ) Answer shows 1.9K views What about MSM and Grapefruit Seed Extract for Rosacea? (New FAQ) Answer shows 1.9K views What is the Hanacure Face Mask? (New FAQ) Answer shows 1.9K views What brand of laser for rosacea? (New FAQ) Answer shows 1.8K views Are there any IPL Anecdotal Negative Reports? (New FAQ) Answer shows 1.8K views What do alarmins have to do with rosacea? (New FAQ) Answer shows 1.8K views What is the Rosacea Diet? (New FAQ) Answer shows 1.8K views Spicy Food A Rosacea Trigger? (New FAQ) Answer 1.8K views What Is An Elimination Diet? 1.7K views Does Lifestyle Effect Rosacea? 1.7K views What Non Prescription Treatments Are Available? 1.7K views Is Obesity A Factor In Rosacea? 1.7K views Does Coconut Oil Improve Rosacea? (New FAQ) Answer shows 1.7K views Are there any Laser Anecdotal Negative Reports? (New FAQ) Answer shows 1.7K views Is there a generic ivermectin cream? (New FAQ) Answer shows 1.7K views Does Lifestyle Effect Rosacea? 1.7K views What are 7 Things Girls With Rosacea Are Tired Of Hearing? (New FAQ) Answer shows 1.7K views Will I Get Rhinophyma? 1.6K views What is sulfur butter for rosacea? (New FAQ) Answer shows 1.6K views What About Steroid Induced Rosacea? 1.6K views If you take Soolantra continuously does it get worse before it gets better? (New FAQ) Answer shows 1.6K views What about Fluorescent Lights (and other artificial lights) and rosacea? (New FAQ) Answer shows 1.6K views Does Sai Pallavi suffer from rosacea? (New FAQ) Answer shows 1.6K views Does Lex Gillies, Beauty Blogger Have Rosacea? (New FAQ) Answer shows 1.6K views Does Amy Schumer suffer from rosacea? (New FAQ) Answer shows 1.6K views Is Sofia Vergara “prone to rosacea”? (New FAQ) Answer shows 1.6K views What is the Antioxidant System Defect Hypothesis Theory in rosacea? (New FAQ) Answer shows 1.6K views What Prescription Treatments Are Prescribed For Rosacea? 1.5K view Is Rosacea A Genetic Disease Or Caused By The Environment? 1.5K views What are the Jennifer Brown Soolantra Videos? (New FAQ) Answer shows 1.5K views What about amberin for hot flashes? (New FAQ) Answer shows 1.5K views How can I post a review of an item in the RRDi affiliate store? (New FAQ) Answer shows 1.5K views Do Renee Zellweger and Cameron Diaz Both have Rosacea? (New FAQ) Answer shows 1.5K views What is radio frequency for rosacea? (New FAQ) Answer shows 1.4K views What is the difference between demodex, dust mites, bed bugs and scabies? (New FAQ) Answer shows 1.4K views What treatments are there for Phymatous (Rhinophyma) Phenotype 5? (New FAQ) Answer shows 1.4K views What is a rosacea mimic (video)? (New FAQ) Answer shows 1.4K views What is Kwellada-P Lotion for rosacea? (New FAQ) Answer shows 1.4K views What is IPL for rosacea? (New FAQ) Answer shows 1.4K views Are there other light devices for rosacea besides laser, LED and IPL? (New FAQ) Answer shows 1.4K views What about Oral Ivermectin Compared with Ivermectin–Metronidazole Combined Therapy? (New FAQ) Answer shows 1.4K views What about Melanotan (Afamelanotide) for rosacea? (New FAQ) Answer shows 1.4K views What does Chlamydophila Pneumoniae have to do with rosacea? (New FAQ) Answer shows 1.4K views How does the AARS spend its donations? (New FAQ) Answer shows 1.4K views (New FAQ) Answer shows 1.4K views Is there any treatment for rosacea that works on everyone? (New FAQ) Answer shows 1.4K views What about Rossoseq for Rosacea? (New FAQ) Answer shows 1.4K views Which Alcohol is Your Rosacea Trigger? 1.3K views What Natural Treatments Are There For Rosacea? 1.3K views What are some free or inexpensive treatments for rosacea? 1.3K views Is The Nervous System Involved With Rosacea? 1.3K views Is Rosacea Confusing, A Bewilderment And A Mystery? 1.3K views Do Children Get Rosacea? 1.3K views What About The Immune System Theory On Rosacea? 1.3K views What Is The Vascular Theory On Rosacea? 1.3K views What Bacteria Is Associated With Rosacea? 1.3K views What is Persistent Erythema ( Phenotype 2)? (New FAQ) Answer 1.3K views What is Avenova? (New FAQ) Answer 1.3K views Does Going to the Beach Improve Rosacea? (New FAQ) Answer 1.3K views What about Botox for Rosacea? (New FAQ) Answer 1.3K views What about Praziquantel for rosacea? (New FAQ) Answer 1.3K views How does the NRS spend its donations? (New FAQ) Answer 1.3K views What are the steps to receive a free RRDi G Suite account? (New FAQ) Answer 1.3K views What is Medscape Clinical Advances in Rosacea? (New FAQ) Answer 1.3K views Does William Shatner suffer from rosacea? (New FAQ) Answer 1.3K views Did Rembrandt suffer from rosacea? (New FAQ) Answer 1.3K views What about Multistat® For Treatment Of Rosacea? (New FAQ) Answer 1.3K views What about Multistat® For Treatment Of Rosacea? (New FAQ) Answer 1.3K views Can Rosacea be Cured? 1.2K views What is Nu-Stock? (New FAQ) Answer shows 1.2K views Demodex Density Count - What are the Numbers? (New FAQ) Answer shows 1.2K views What is Arquebusade Herbal Water for Rosacea? (New FAQ) Answer shows 1.2K views Is Carbohydrate a Rosacea Trigger? 1.2K views Do You Have A Gut Feeling? 1.2K views What does Tom Busby have to say about ocular rosacea (phenotype 6)? (New FAQ) Answer shows 1.2K views What is broad band light for rosacea? (New FAQ) Answer shows 1.2K views What about Brimonidine for rosacea? (New FAQ) Answer shows 1.2K views What about Taurine Bromamine for rosacea? (New FAQ) Answer shows 1.2K views What does Propionibacterium Acnes have to do with rosacea? (New FAQ) Answer shows 1.2K views Name Five Five Celebrities with Rosacea? (New FAQ) Answer shows 1.2K views Does William Clinton suffer from rosacea? (New FAQ) Answer shows 1.2K views Who is the rosacea poster boy? (New FAQ) Answer shows 1.2K views Does Infrared Sauna Hurt or Help Rosacea? (New FAQ) Answer shows 1.2K views Does Kristin Chenoweth Have Rosacea? (New FAQ) Answer shows 1.2K views What About Candida Albicans And Rosacea? 1.1K views What Is The Inflammatory Theory On Rosacea? 1.1K views What is Halogen rosacea? (New FAQ) Answer 1.1K views What is the Ivermectin for Rosacea Horse Paste Poll? (New FAQ) Answer 1.1K views What is Cat's Claw for Rosacea? (New FAQ) Answer 1.1K views What Is PDT? 1.1K views What are some treatments for Phenotype 2? (New FAQ) Answer 1.1K views What is the Thoemmes Demodex DNA Test? (New FAQ) Answer 1.1K views What is Endothelyol for Erythematotelangiectatic Rosacea? (New FAQ) Answer 1.1K views What Light Devices are available for rosacea? (New FAQ) Answer 1.1K views How do you wash off Soolantra? (New FAQ) Answer 1.1K views Do Anti-Anxiety Prescriptions Improve Rosacea? (New FAQ) Answer 1.1K views What is Nonpathogenic E. coli strain Nissle 1917 in Probiotics? (New FAQ) Answer 1.1K views What is Rosacea Beyond the Visible? (New FAQ) Answer 1.1K views Is the painting in the Lourve, The Old Man and His Grandson Phenotype 5? (New FAQ) Answer 1.1K views Can I join the RRDi with just an email address? (New FAQ) Answer 1.1K views How is rosacea research compared with other skin conditions? (New FAQ) Answer 1.1K views Is this rosacea? 1K views Is there a steroid rosacea video? (New FAQ) Answer shows 1K views Does Salvia hispanica kills mites in 7 minutes? (New FAQ) Answer shows 1K views What About H Pylori And Rosacea? 1K views What about alcohol and rosacea? 1K views What about Plaquenil (Hydroxychloroquine) for Rosacea? (New FAQ) Answer shows 1K views Does Levothyroxine ( L-thyroxine) Exacerbates Rosacea? (New FAQ) Answer shows 1K views What about Caper Extract Cream for Rosacea? (New FAQ) Answer shows 1K views Who do Male Patients With Telangiectasia, Rosacea Tend To Wait To Seek Treatment? (New FAQ) Answer shows 1K views What are the benefits of volunteering for the RRDi? (New FAQ) Answer shows 1K views What is the difference between acne and rosacea? 943 views What about florescent lights and rosacea? 943 views What is the Rosacea Rescue Web Site? (New FAQ) Answer shows 935 views What do demodex mites have to do with rosacea? 927 views What Rosacea Treatment And Skin Care Tips Are Available? 911 views What Microorganisms Have Been Associated With Rosacea? 878 views What Oxidative Stress, Ferritin and Rosacea? (New FAQ) Answer shows 844 views What About Accutane For Rosacea? 839 views Does treatment for rosacea usually gets worse before it gets better? (New FAQ) Answer shows 837 views Can Rosacea Be Misdiagnosed? 826 views What About Demodex Mites And Rosacea? 821 views Who is Amelia Fais Harnas and her Art, Wine, & Rosacea? (New FAQ) Answer shows 817 views What is Rosacea? - Talk with Neal Schultz, MD 812 views Can Rosacea Co-Exist With Other Skin Conditions? 800 views What is Bionect Cream for rosacea? (New FAQ) Answer shows 780 views Is Rosacea Contagious? 773 views What's The Difference Between A Subtype And A Variant Of Rosacea? 772 views How Do I Deal With Rosacea Emotionally? 760 views What About Steroids For Rosacea? 744 views Can You Use the Skin Microbiome to Clear Rosacea? (New FAQ) Answer shows 721 views What is a Grassroots Rosacea Non Profit? (New FAQ) Answer shows 719 views What Is Neurogenic Rosacea? 717 views Any tips for reducing or preventing flushing or flare ups caused by exercise? 716 views What is a grassroots non profit organization for rosacea? (New FAQ) Answer shows 711 views What Anti-Flushing Drugs Are Available? 707 views What about Callistemon Viminalis for rosacea? (New FAQ) Answer shows 703 views What about Quassia amara for rosacea? (New FAQ) Answer shows 699 views What is the Placebo/Nocebo Effect in Rosacea? (New FAQ) Answer shows 676 views What skin conditions mimic rosacea? (New FAQ) Answer shows 672 views What is the Bradykinin Rosacea Theory? (New FAQ) Answer shows 672 views How do I submit an article to the RRDi? (New FAQ) Answer shows 659 views Does rosacea spread beyond the facial region? 654 views Who funds most rosacea research? (New FAQ) Answer shows 632 views What are blood filled cysts? 590 views Is there a Holistic Approach to Rosacea? (New FAQ) Answer shows 589 views What is a simple method to control rosacea? (New FAQ) Answer shows 576 views Is the Epidermal Barrier Dysfunction something to consider? (New FAQ) Answer shows 555 views What does rosacea look like? 550 views What is Rosacea? 534 views Who are some famous rosaceans? 534 views What is the Butterfly Effect in Rosacea? 519 views Does Rosacea Cause Emotional Pain? (New FAQ) Answer shows 516 views What is it about demodex mites that may trigger rosacea? (New FAQ) Answer shows 516 views Can I create my own free rosacea blog? (New FAQ) Answer shows 506 views What are 13 questions proposed by two rosacea researchers? (New FAQ) Answer shows 492 views What are some Topical Probiotic Treatments for Rosacea? (New FAQ) Answer shows 472 views What about HLA-DRA Locus and Rosacea? (New FAQ) Answer shows 451 views What about Rosacea and Glioma? (New FAQ) Answer shows 441 views What is causing the rosacea fire in our diet? (New FAQ) Answer shows 433 views Is the Epidermal Barrier Dysfunction something to consider? (New FAQ) Answer shows 433 views What is the Skin Barrier Integrity with Fatty Acids Theory? (New FAQ) Answer shows 426 views What is Rosacea Rebound? 418 views What about Artemesinin for Rosacea? (New FAQ) Answer shows 408 views What about IBD and Rosacea? (New FAQ) Answer shows 407 views Why is the phenotype classification superior to the subtype classification? 405 views What about depression and rosacea? (New FAQ) Answer shows 405 views When treating rosacea is more or less better? (New FAQ) Answer shows 395 views How do contraceptives effect rosacea? 394 views What do Cytokines have to do with Rosacea? (New FAQ) Answer shows 388 views Are Peer Reviewed Papers the Gold Standard? (New FAQ) Answer shows 388 views How much does the American Academy of Dermatologists spend on research? (New FAQ) Answer shows 385 views What Moisturizer for Rosacea? 370 views What is radiofrequency for rosacea? 370 views Where have all the rosaceans gone? (New FAQ) Answer shows 354 views What does Cathlecidin have to do with rosacea? 348 views What is ImageJ for Rosacea Research? (New FAQ) Answer shows 344 views What is the Risk-benefit Ratio in Rosacea Research & Development? (New FAQ) Answer shows 339 views How Many Skin Types? Renée Rouleau Says Nine Types! 335 views Do more women or men have rosacea? 326 views What is the difference between a Trigger, a Tripwire, a Flareup, and a Flush? 298 views Is Folliculitis a Rosacea Mimic? (New FAQ) Answer shows 262 views What is the difference between sensitive skin and rosacea? (New FAQ) Answer shows 226 views What would you prefer rosacea research to be focused on? 226 views Is Rosacea Associated with Other Diseases? 216 views How does Phenotype Classification work? (New FAQ) Answer shows 214 views How Can I Reduce Large Pores? 190 views What Oral Treatments for Rosacea Are Available? 164 views What about Raynaud syndrome and Rosacea? (New FAQ) Answer shows 158 views Do Dermatological Textbooks have any Conflict of Interests? (New FAQ) Answer shows 142 views How can I win a free jar of the ZZ cream? (New FAQ) Answer shows 101 views Will Rosacea Develop into Phenotype 5 - Phymatous? 19 views What does Staphylococcus epidermidis have to do with rosacea? (New FAQ) Answer shows 17 views Does the skin industry use social media to advertise? (New FAQ) Answer shows 10 views What if I want to volunteer for the RRDi as Grant Writer? (New FAQ) 4 views
  15. Guide

    Final Appeal

    You are spot on with your comment. Just need someone like you to post some more and engage as a volunteer to implement your insight into all this. Change your membership status from inactive to active, which would be helpful.
  16. Guide

    Final Appeal

    Just an update on our financial situation. We were able to continue with Invision Community for our website, but this has depleted our donations to just $152.86 at the end of March. Not sure if we can continue unless we get 100 active subscribers which would keep us going. Donations in 2022 including subscriptions totaled $357.94. Expenses in 2022 amounted to $415.82. We also need some active subscribers who post as well as any volunteers who would like to serve on the board of directors. Could you post in this thread your thoughts on whether you think the RRDi should keep going or not? In order to post in this thread you will need to join the RRDi. If you want to volunteer to serve on the board of directors please post why and what you would do to make the RRDi an active non profit organization for rosacea sufferers. This final appeal has been going on now since June 2021 and we scrapped by with just barely covering our expenses to keep this non profit organization going. It is estimated that in 2023 we will need at least $1K in donations to keep going. Subscriptions help but we simply don't have enough subscribers to meet our expenses. Here is a list of the major expenses: Invision Community website forum Registering our domains Apple Developer account (to be able to use Sign in with Apple If you want all the details of our financial situation, click here.
  17. We do have a few active members now who have subscribed. We need about 100 members who subscribe to keep this website going which means keeping the RRDi going. Why we chose the subscription vs the freemium version of using our website is explained here. The active members still do not post which is not a requirement, the only requirement is to subscribe. Do you have any comment about any of this? You can post for a minimum of a two dollar subscription or if you just donate two dollars we can make you an active member for one month so you can post for a month. You simply donate through a multitude of services listed on our donation page and then CONTACT us explaining you made a minimum two dollar donation and we can activate your membership for a month (or longer if you donate more). If you don't like subscriptions, why not post and explain how we should be operating our website. Your comment could be published in this thread, ACTIVE MEMBERS POSTING, or anywhere you want to post on our website. Maybe you have some insight into why our ACTIVE members don't post at all? Read more.
  18. Our website is now a subscription based members only website. 95% of our website requires a donation of a minimum of $2/month ($1/month for three or more months) so we can keep this website going. Guests can only view about 5% of our website. We no longer allow free membership unless you are on our volunteer staff. Please register and donate $12 for a twelve month subscription. Thanks for your donation! All members will have to purchase a subscription to be active again for at least one month or longer. The RRDi is now showing the active members vs the inactive members in member's profiles, since the non voting and the voting members haven't been engaging in any rosacea discussion for some time now. All you do is login to your account. Look at your account profile and it shows whether you are active or inactive. If you haven't posted in the last 30 days you are automatically placed in the inactive member group. Just post in any area open to guests and you automatically become active again and have access to the member area. Because of a relatively inactive forum 'engagement' with fellow rosaceans which is really core to our mission (view the RRDi Mission) we have attempted to encourage members to post. Members, you are our only hope! Post! Read our mission goal below: 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. Since the vast majority of our 1.5K members are not engaging in any discussion, we inform everyone whether a member is active or inactive. The definition of an active member is one who posts a minimum of at least one post a month. If after one month a member does not post the member status is inactive. This means that access will be visible to what a 'guest' user will be able to see. Ask not what rosaceans can do for you, but what can you do for rosaceans? Rosaceans Helping Rosaceans. INACTIVE MEMBER Steps to Become Active Simply login to your account and donate to one of our subscription plans. If you have forgotten your login credentials use our contact form and give us your email address you used to register your account and we will help you gain back your access. We will be happy to restore your active status once we have verified which subscription plan you donated for. (2) Another way to become active is donate two dollars. Contact us and explain you donated and want your inactive membership to be active again. We will need to know what email address you used to register your account and on what date you donated. (3) Become a volunteer and we waive the subscription fee. However, if you don't post in thirty days you become inactive. (4) Simply subscribe and you become active again. Members Posting How can inactive members post and become an active member again? Simple. Subscribe. Find an area you would like to post something, For example, any area still open to guests allows you to START A NEW TOPIC or QUOTE button. Just be sure you are logged into your RRDi member account. Post. If you are having issues logging into your RRDi member account use the contact form and explain your issue. Be sure to include your email address so we can resolve your login issue for you, if you want a resolution. New Members Subscribe to one of our subscription plans. We are trying to encourage engagement. Rosaceans helping Rosaceans.
  19. nikalinov

    Welcome to the RRDi. If you need assistance, please use our contact form and volunteers will assist you. Post any comments or questions on any topic in the guest or member areas of our forum. May the RRDi help you in your control of your rosacea. 

    Guide

  20. Guide

    Erythromelalgia

    image courtesy of the TEA non profit organization Erythromelagia (EM) is one possible diagnosis to differentiate from rosacea. What is it? According to the TEA web site: "Erythromelalgia is a rare and frequently devastating disorder that typically affects the skin of the feet or hands, or both, and causes visible redness, intense heat and burning pain. The term erythromelalgia describes the syndrome: erythros (redness), melos (extremity) and algia (pain). An alternate name is “erythermalgia” that emphasizes the thermos (heat) – an essential part of the syndrome. While usually affecting the lower extremities (legs and feet) and upper extremities (arms and hands) other body parts like faces or just ears or the nose may be involved. It usually affects both sides of the body, but can affect just one. The associated pain and burning sensations can be extremely severe. People with EM often make major adjustments to their lifestyles to avoid flare-ups. Even in mild-to-moderate cases, normal functioning such as walking, standing, working, socializing, exercising, and sleeping may be impaired." What is EM? "In 2004 erythromelalgia became the first human disorder in which it has been possible to associate an ion channel mutation with chronic neuropathic pain, when its link to the SCN9A gene was initially published in the Journal of Medical Genetics." Wikipedia EM can involve the face.[5] Diagnosis "Experts indicate that the intermittent nature of erythromelalgia in some cases may potentially lead to difficulties or delays in its diagnosis. Therefore, because symptoms may be reduced or absent until late in the day, for example, physicians may recommend that affected individuals take pictures of the involved regions during flaring and/or schedule clinical examinations late in the day if possible. In addition, during diagnostic assessment, physicians may possibly recommend exercise or immersion of an affected region in hot water for a certain period (e.g., approximately 10 to 30 minutes), to provoke a flare so a diagnosis may be made." [7] Treatmentt "In this informal survey, the use of high oral doses of magnesium produced good and sometimes dramatic results in 8 of 13 patients who had been unresponsive to many other treatments. These results suggest a possible role for high-dose oral magnesium in the treatment of EM and, perhaps, other vascular disorders." [1] "We tried oral mexiletine, a class Ib antiarrythmic agent, in view of its reported role in various chronic painful conditions. Dramatic improvement was observed with its use. Both patients improved after several weeks of use, and there were fewer soaking episodes. We observed no adverse effects with mexilitine therapy." [2] "Lumbar sympathetic block and TSB are useful methods for treatment of primary erythromelalgia." [3] "We conclude that thalamic stimulation was successful in this case of primary erythromelalgia." [4] Ketamine 0.5% and Amitriptyline 1% has been used as a treatment not only for EM but also for rosacea. "Even when the correct diagnosis of erythromelalgiais made, treatment is difficult, with no single therapy consistently effective." [5] "One clinical study has demonstrated the efficacy of IV lidocaine or oral mexilitine, though differences between the primary and secondary forms were not studied. Another trial has shown promise for misoprostol, while other have shown that gabapentin, venlafaxine and oral magnesium may also be effective, but no further testing was carried out as newer research superseded this combination. Strong anecdotal evidence from EM patients shows that a combination of drugs such as duloxetine and pregabalin is an effective way of reducing the stabbing pains and burning sensation symptoms of erythromelalgia in conjunction with the appropriate analgesia. In some cases, antihistamines may give some relief. Most people with erythromelalgia never go into remission and the symptoms are ever present at some level, whilst others get worse, or the EM is eventually a symptom of another disease such as systemic scleroderma." [6] Support EM Thread at RF EM Yahoo Group TEA We have a post on The Erythromelalgia Association [TEA] and give high marks to this non profit on how it spends its donations. If only the members of the RRDi would follow the example of TEA. We can only hope our members see the need to volunteer and make donations for rosacea as TEA members have done. If not, you can always have the other non profit rosacea organizations who are run by non rosaceans and follow how these other non profit organizations spend their donations. Reply to this Topic There is a reply to this topic button somewhere on the device you are reading this post. End Notes [1] Ann Pharmacother. 2002 Feb;36(2):255-60. High-dose oral magnesium treatment of chronic, intractable erythromelalgia. Cohen JS. [2] Ann Saudi Med. 2009 Jul-Aug;29(4):316-8. Experience with oral mexiletine in primary erythromelalgia in children. Iqbal J, Bhat MI, Charoo BA, Syed WA, Sheikh MA, Bhat IN. [3] Masui. 1989 Mar;38(3):388-93. [A case of primary erythromelalgia (erythermalgia) treated with neural blockade]. Takeda S, Tomaru T, Higuchi M. [4] Neurosurgery. 2005 Oct;57(4 Suppl):E404; discussion E404. Thalamic stimulation as a treatment for primary erythromelalgia: technical case report. Delye H, Lagae L, Vermylen J, Nuttin B. [5] Dermatol Online J. 2017 Apr 15;23(4): Erythromelalgia involving the face. Gilmore RR, Applebaum DS, Parsons JL, Hsu S [6] Erythromelalgia, Wikipedia [7] Erythromelalgia, NORD
  21. First off, if you don't know what Erythromelalgia is, it is listed as a rosacea mimic and should be ruled out in a differential diagnosis of rosacea. Someone kindly pointed out to me that The Erythromelalgia Association website is very user friendly and was impressed with the free Guide it offers on its website indicating to me that the RRDi needs to be more 'user friendly' and offering such a guide. So I decided to investigate and contacted TEA and asked for a copy of the latest Form 990 which was emailed to me and I have given a cursory investigation and am very impressed with how this 501 c 3 non profit organization spends its donations. Form 990 First off, the board of directors are all volunteers. TEA has 2000 members, is a grassroots patient advocacy 501 c 3 non profit organization, and more importantly in 2018 received over $50K in donations which were 100% public (no private donations). They spent $103K which breaks down to this: $75,000 for Grants and similar amounts paid (list in Schedule O) "Gift for research directly related to erythromelalgia" $13,398 for Professional fees and other payments to independent contractors $14,230 for Printing, publications, postage, and shipping (newsletter) $884 for other expenses Total Expenses $103,512 Download Form 990 EZ for 2018 and read it yourself: Form990Package.2018.pdf The RRDi Imitates the TEA So the TEA is definitely how a non profit organization should be run and I give the highest marks (4 stars) possible to TEA for how it is helping Erythromelalgia sufferers. We wish that the members of the RRDi would be interested in imitating the TEA and help make the RRDi just like how TEA is run. The RRDi is very similar in how the board of directors are volunteers. We just need volunteers to step up to plate like the TEA volunteers are doing. It would be good for members of the RRDi to ask questions about the above or comment on this post. Just like the RRDi whose board of directors all suffer from rosacea, TEA's board of directors have at least five who suffer from EM. In 2018 these volunteers donated $50K for EM research, and actually spent $75K on 'research directly related to erythromelalgia.' Isn't that the way a non profit organization should work? Compare that with the three other non profits for rosacea who spend most of the donations on private contractors owned by one of the board of directors or spend most of the donations on the members who are mostly dermatologists for meetings and conventions, and very little, around ten percent on rosacea research. The three other non profit organizations for rosacea are run by business professionals or dermatologists and not one of the board members suffer from rosacea which explains why and how these three other non profit organizations for rosacea spend the donations. Will rosaceans ever be united and support a non profit organization like TEA? Hope.
  22. image courtesy of Free paper chain v.2 Stock Photo We obviously aren't sure of what community support means to you, but we are trying to figure that out by forming a NON PROFIT organization for rosacea patient advocacy and encouraging rosaceans to come together by joining the RRDi and taking steps to obtain and disseminate community support for those who are suffering from rosacea. What has the RRDi done in this regard? (1) Creating a website with pages of information, a public forum of rosacea topics, a community support category, a private forum, member driven rosacea blogs, galleries and clubs, as well as the tools discussed in the article, RRDi and the Medical Digital Revolution. (2) Journal of the RRDi and the ability for anyone (amateur or professional) to submit a paper on rosacea to be published. (3) A legal non profit organization to allow donations to be tax deductible. (4) Education grants and the ability to volunteer as a grant writer as a non profit organization grant writer (possibly being reimbursed for your effort). (5) A way for you to volunteer to help rosacea sufferers. (6) Attracting sponsors to support our non profit organization. (7) Instructions on how to use our forum. (8) Our charter allows members to be compensated for services if we have the funds to do this. So, what does community support mean to you? Please find the reply button and post what it means to you? We would love to understand what you think community support means to you or what you think a non profit for rosacea should be doing? You may think that posting in a community of rosacea sufferers your experience with rosacea and getting some feedback is what community support means to you? If so, this is the correct forum category to do that by finding the green reply button and post your concern.
  23. Invision Community Over Tapatalk or any Social Media Rosacea Group "Grassroots movements are associated with bottom-up, rather than top-down decision making, and are sometimes considered more natural or spontaneous than more traditional power structures." [1] We have chosen the Invision Community platform to interface between members (allowing also a private Tapatalk private forum). We prefer Invision over Tapatalk or any of the rosacea social media platforms which are obviously more popular, however, we do have accounts with the major social media platforms if you prefer that sort of engagement (scroll down to the subheading RRDi Social Media Accounts). If you are interested in volunteering at any of the social media RRDi accounts please join and volunteer (mention this when you register that you would like to volunteer to post in one of the RRDi social media accounts, i.e., Facebook, Instagram, Reddit, etc.). We need volunteers to moderate the RRDi social media accounts! Watch Less than one minute eight second trailer for the following longer 7 minutes 27 second grassroots video. If you really volunteer we waive the subscription fee for you. If you don't like the Invision platform, then join, engage by posting, and suggest how a rosacea non profit organization should be run. Volunteer. LONGER GRASSROOTS VIDEO Social Media Groups are Top Down Decision Making All the rosacea social media groups (except those run by the RRDi) are top-down decision making groups. Whoever runs the rosacea group, i.e., Facebook, Instagram, Reddit, Twitter, etc., make all the rules and you have no choice who runs the rosacea group. Whoever 'owns' the rosacea group makes all the decisions (rules) and are not grassroots decision making. There are few, if any, rosacea social media groups that are grassroots, letting the members make the decisions on how the social media group is run. Are you aware of any rosacea social media group that allows the members to remove who runs the group? The exception is our RRDi social media accounts which allows the members to choose who sits on the board of directors of the RRDi. The reason we are explaining this is that all the rosaceans have gone to social media. It you want to volunteer and manage or be a moderator of the RRDi Social Media accounts read this post and watch the video about volunteering. RRDi Grassroots Organization The RRDi is a grassroots organization founded by rosacea sufferers who are volunteers. The board of directors are all rosacea sufferers and their motive to volunteer is to help rosacea sufferers. Now compare that with who serves on the 'other' rosacea non profit organizations board of directors. [2] As far as we know there are only three other rosacea non profit organizations (ARSC, AARS, and NRS) and possibly one other, the AAD that might spend a tiny, tiny bit of money on rosacea research. All the board members of these 'other' non profits are NOT rosacea sufferers and are mostly comprised of businessmen and medical professionals (dermatologists) who have a vested interest in rosacea since they may receive a salary or benefit from money spent on private contractors used by the non profit organization, or receive compensation for attending conventions or meetings sponsored by the non profit organization. Follow the money where the non profit spends the most of its donations on, and if you take the time, you will discover it is very little on rosacea research. Why not watch the video on rosacea research to get you up to speed? You may wonder how non profits work? The members of the RRDi are mostly rosacea sufferers [rosaceans] and have a say who serves on the board of directors of the RRDi (the charter requires that the board members suffer from rosacea). The board of directors of the RRDi are sometimes chosen by the other board members but every five years the voting members of the RRDi may vote who may continue to serve on the board of directors. The members could replace the entire board of directors. This is bottom up decision making. The other rosacea non profit organizations are NOT grassroots and work from the top down. How do the other rosacea non profit organizations choose their board members? Answer: Top down decision making. What Motivates Board Members? Money is the motive on who makes the decisions on the spending of the donations with the 'other' top down rosacea non profits and if you follow the money you will find that the board of directors make sure they benefit in some monetary way. This is a top down direction since the other non profits are run by NON rosaceans and have their own personal agenda so that members of the board somehow benefit with some compensation with the spending of the donations. Money is usually at the root of any top down decision making process. Grassroots Motive So if you have similar grassroots philosophy why not join the RRDi and volunteer. If money is your motive, go to the 'other' rosacea non profits. [2] If volunteering by helping other rosaceans is your motive, you have found the only grassroots rosacea non profit organization on planet earth. [3] Only One Non Profit Organization Run by Rosaceans There is only one non profit organization for rosacea founded by rosacea sufferers, this one, the RRDi. All the others are founded by non rosaceans and all you do is see who is serving on the board of directors and note how the board members on each rosacea non profit benefit spend the donations (each board determines how the donations are spent). Follow the money (where does most of the donations of the non profit end up being spent on?). Donations Spent on What? If you could gather together say 10K rosaceans into one non profit organization for rosacea and fund a paper on a rosacea topic and receive from each member donating just one dollar, it would be a cinch to get a reputable medical clinician to investigate further into whatever topic is chosen and nail it to the wall with a double blind, placebo controlled, peer reviewed study. However, if you did get 10K rosaceans together to donate each $1 that would be a miracle in itself. What do you want rosacea research to be focused on? Alas, this dream, which began over sixteen years ago with the RRDi was formed, hasn't brought about such unity among rosacea sufferers. Instead, rosacea sufferers are splintered into private social media groups, i.e., Facebook, Instagram, Reddit, etc. and continue to parrot the non profit organizations for rosacea that are run by non rosacea sufferer board members with a top down decision making process. And rosaceans prefer and love it that way. Investigate all this yourself. Do these social media rosacea private groups engage in any rosacea research or do they accept donations? Grassroots Glimmer of Hope for Rosacea However, there is perhaps a glimmer of hope. The owner of the Rosacea Forum, rosaceagroup.org, formed a non profit organization [RRF] in 2004 and gathered together a group of rosacea sufferers and collected a total of $16K and donated all of this to the NRS. So, it can be done. However, the RRF non profit for rosacea dissolved. What happened? Read for yourself. This example of the RRF is a grassroots non profit that actually did something in sponsoring their own research, except they gave the $16K to a non profit that is run from the top down. A brief glimmer of grassroots hope for rosacea. The RRF was a flicker of light in a dark rosacea world who love rosacea social media groups rather than coming together into a grassroots patient advocacy non profit organization. Grassroots Non Profits Beacon of Light An example of an excellent grassroots non profit organization beacon of light is the The Erythromelalgia Association that actually sponsors their own research on erythromelalgia, so it can be done, and is done by this grassroots non profit organization. Do you know of any other grassroots non profits that are an example like this? Why not tell us about it by replying to this thread? Watch the video on this page about the EA organization. Rosacea Independent Sponsored Research Is a grassroots motive something to consider, or are you content with the current status quo rosacea research being done by a 'top down' decision making process used by the 'other non profits for rosacea' whose board members are not suffering from rosacea? Do you think the paltry rosacea research being sponsored by these 'top down' 'other' non profit organizations for rosacea is the best that can be done? Are you aware of what most rosacea research being conducted is sponsored by? Most rosacea research is being sponsored by the skin industry. [4] Do you think a grassroots non profit organization for rosacea could sponsor their own independent rosacea research? As Miracle Max points out, 'It would take a miracle." Watch the video on this topic on this page. Reply to this Topic There is a reply to this topic button somewhere on the device you are reading this post. End Notes [1] Grassroots, Wikipedia [2] Links, Other Non Profit Organizations [3] Volunteering What Community Support Means to You? [4] Rosacea Research in Perspective of Idiopathic Diseases (members only) Rosacea Research in Perspective of Funding (members only)
  24. The RRDi has been using Invision Community forum platform since 2004. When we started in 2004 it was recommended by Warren Stuart who was the assistant director of the RRDi to use what was then called Invision Power Services (later the name was changed to Invision Community). It is a powerful platform with many add-on features and a significant number of developers adding plugins and additional features to the platform. Invision Community Clients Some very large corporations use the Invision Community platform. Do you recognize any of these companies below? Are the above companies successful using the Invision Community platform? Medical Clients Who Use Invision Community Platform While all the above companies have their social media accounts as well, these well known companies prefer to continue using the Invision Community Platform, and so does the RRDi prefer using this same platform because of its excellent features. We have invested our donations into using this platform. So if you find this platform not to your liking and prefer the social media style platform we recommend you VOLUNTEER to help us improve our website. Android & iOS Mobile Apps However, with the advent of mobile devices and social media platforms the trend has focused on mobile apps using iOS and Android devices found in the Apple App Store and Google Play Store. The popularity of using these apps over using a browser to view a website has increased the use of social media platforms such as Reddit, Facebook, Instagram, Twitter, etc. The developers and owners of the Invision Community platform have announced beta versions of the Android app (iOS beta app has expired) for their platform which has been embedded for years using only a web browser, so we have announced with this post here asking for volunteers to download the beta versions and help test these new apps. Please consider volunteering and using these beta versions of the apps. Reply to this Topic There is a reply to this topic button somewhere on the device you are reading this post.
  25. Welcome Dallas to the RRDi. If you need any assistance it would be good to post in the Guest feedback your concern at this link so that guests can understand what you have experienced. Here is the link: 

    https://irosacea.org/forums/forum/137-post-feedback-here/

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