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History of the RRDi
There was a post at a Yahoo group in November 23, 2002 that started the idea of making a non profit organization for rosacea sufferers to collaborate together.The Rosacea Research & Development Institute began as an idea by the founder, Brady Barrows, on November 23, 2002 when he founded the following yahoo group:
health.groups.yahoo.com/group/international-rosacea-society
The above yahoo group was changed on July 24, 2004 to:
health.groups.yahoo.com/group/irosacea
And then later changed on February 14, 2005 to this yahoo group:
health.groups.yahoo.com/group/rosacea-research
The above yahoo group was deleted June 7, 2006 since the private forum for corporate members began in April/May 2006. Since then, Yahoo Groups has been removed from the internet.
A need for a non-profit organization that heard the voice of rosaceans suffering from this disease was seen early on and discussion continues to this day. Upon moving to Hawaii the founder discovered that forming a non-profit organization in this state would be simpler than in other states and applied for approval as a non-profit corporation. A Charter was set up. The non profit recognition was approved on June 7, 2004 by the State of Hawaii and after a lengthy period, tax-exempt approval as a 501 (c) (3) non profit organization was obtained by the IRS in January 2006 and recognition was effective back to June 7, 2004. This process took over a year and a half. More details of all this are written in the article Why Form Another Non Profit Organization For Rosacea?
The Board of Directors were chosen by the corporation members and the officers were appointed in January 2005. More board members were added in 2006 and later.
The web site is constantly being improved by volunteers. Volunteers are seeking funding and you can join us to seek corporate donations, seek grants, or find the best minds to join the RRDi MAC, the only medical advisory committee volunteering to find a cure for rosacea, listen to corporate RRDi members' concerns and advise the board of directors on the direction the RRDi should go. Several private member forums were experimented which have not proven popular. For a number of years the RRDi recommended Warren Stuart's www.rosaceagroup.org as the public forum and volunteers have made the private forum for corporate members on the irosacea.org web site. To use the public forum you must join the RRDi. This public corporate member forum is where decisions are discussed. The public forum can be found at this url:
Steve Andreessen spent many volunteer hours on not only the above IPB forum (now called Invision Community) but also our web site. Warren Stuart has also spent many hours volunteering on the web site as well. Under Warren's direction we purchased the Invision Power Services forum (now called Invision Community). Sadly, Warren Stuart passed away. David Pascoe took over Warren's Rosacea Forum. The focus of the RRDi for years has been to gather together the best minds on rosacea into the RRDi Medical Advisory Committee, gathering volunteers to raise public awareness of the RRDi in the Public Relations Committee and to increase RRDi membership, and finally to increase funding through volunteer efforts in the Funding Committee by volunteers. You can see the results of all this volunteer effort and you can become part of it by joining with just an email address. You may want to read the Message from the Founder and our post about Anonymity, Transparency and Posting before joining.
The RRDi has been affiliated with sponsoring Tapatalk since some users prefer using Tapatalk on mobile devices. In 2019 we have sponsored a private Tapatalk Rosaceans Forum.
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Posts
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Exp Dermatol. 2024 Apr;33(4):e15081. doi: 10.1111/exd.15081. ABSTRACT The close interaction between skin and clothing has become an attractive cornerstone for the development of therapeutic textiles able to alleviate skin disorders, namely those correlated to microbiota dysregulation. Skin microbiota imbalance is known in several skin diseases, including atopic dermatitis (AD), psoriasis, seborrheic dermatitis, rosacea, acne and hidradenitis suppurative (HS). Such microbiota dysregulation is usually correlated with inflammation, discomfort and pruritus. Although conventional treatments, that is, the administration of steroids and antibiotics, have shown some efficacy in treating and alleviating these symptoms, there are still disadvantages that need to be overcome. These include their long-term usage with side effects negatively impacting resident microbiota members, antibiotic resistance and the elevated rate of recurrence. Remarkably, therapeutic textiles as a non-pharmacological measure have emerged as a promising strategy to treat, alleviate the symptoms and control the severity of many skin diseases. This systematic review showcases for the first time the effects of therapeutic textiles on patients with skin dysbiosis, focusing on efficacy, safety, adverse effects and antimicrobial, antioxidant and anti-inflammatory properties. The main inclusion criteria were clinical trials performed in patients with skin dysbiosis who received treatment involving the use of therapeutic textiles. Although there are promising outcomes regarding clinical parameters, safety and adverse effects, there is still a lack of information about the impact of therapeutic textiles on the skin microbiota of such patients. Intensive investigation and corroboration with clinical trials are needed to strengthen, define and drive the real benefit and the ideal biomedical application of therapeutic textiles. PMID:38628046 | DOI:10.1111/exd.15081 {url} = URL to article -
JAMA Dermatol. 2024 Apr 17. doi: 10.1001/jamadermatol.2024.0408. Online ahead of print. ABSTRACT IMPORTANCE: Treatment of erythema and flushing in rosacea is challenging. Calcitonin gene-related peptide (CGRP) has been associated with the pathogenesis of rosacea, raising the possibility that inhibition of the CGRP pathway might improve certain features of the disease. OBJECTIVE: To examine the effectiveness, tolerability, and safety of erenumab, an anti-CGRP-receptor monoclonal antibody, for the treatment of rosacea-associated erythema and flushing. DESIGN, SETTING, AND PARTICIPANTS: This single-center, open-label, single-group, nonrandomized controlled trial was conducted between June 9, 2020, and May 11, 2021. Eligible participants included adults with rosacea with at least 15 days of either moderate to severe erythema and/or moderate to extreme flushing. No concomitant rosacea treatment was allowed throughout the study period. Visits took place at the Danish Headache Center, Copenhagen University Hospital, Rigshospitalet in Copenhagen, Denmark. Participants received 140 mg of erenumab subcutaneously every 4 weeks for 12 weeks. A safety follow-up visit was performed at week 20. Data analysis occurred from January 2023 to January 2024. INTERVENTION: 140 mg of erenumab every 4 weeks for 12 weeks. MAIN OUTCOMES AND MEASURES: The primary outcome was mean change in the number of days with moderate to extreme flushing during weeks 9 through 12, compared with the 4-week run-in period (baseline). The mean change in number of days with moderate to severe erythema was a secondary outcome. Adverse events were recorded for participants who received at least 1 dose of erenumab. Differences in means were calculated with a paired t test. RESULTS: A total of 30 participants (mean [SD] age, 38.8 [13.1] years; 23 female [77%]; 7 male [23%]) were included, of whom 27 completed the 12-week study. The mean (SD) number of days with moderate to extreme flushing was reduced by -6.9 days (95% CI, -10.4 to -3.4 days; P < .001) from 23.6 (5.8) days at baseline. The mean (SD) number of days with moderate to severe erythema was reduced by -8.1 days (95% CI, -12.5 to -3.7 days; P < .001) from 15.2 (9.1) days at baseline. Adverse events included transient mild to moderate constipation (10 participants [33%]), transient worsening of flushing (4 participants [13%]), bloating (3 participants [10%]), and upper respiratory tract infections (3 participants [10%]), consistent with previous data. One participant discontinued the study due to a serious adverse event (hospital admission due to gallstones deemed unrelated to the study), and 2 participants withdrew consent due to lack of time. CONCLUSIONS AND RELEVANCE: These findings suggest that erenumab might be effective in reducing rosacea-associated flushing and chronic erythema (participants generally tolerated the treatment well, which was consistent with previous data), and that CGRP-receptor inhibition holds potential in the treatment of erythema and flushing associated with rosacea. Larger randomized clinical trials are needed to confirm this finding. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT04419259. PMID:38630457 | DOI:10.1001/jamadermatol.2024.0408 {url} = URL to article
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JAMA Dermatol. 2024 Apr 17. doi: 10.1001/jamadermatol.2024.0397. Online ahead of print. NO ABSTRACT PMID:38630466 | DOI:10.1001/jamadermatol.2024.0397 {url} = URL to article
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J Cutan Pathol. 2024 Apr 13. doi: 10.1111/cup.14623. Online ahead of print. ABSTRACT Seborrheic dermatitis is an inflammatory condition that usually presents with erythema, scaly greasy papules, and plaques affecting sebaceous gland-rich areas and predominantly involving the face and scalp. The diagnosis of seborrheic dermatitis can often be rendered based on the clinical presentation. However, in certain cases, a biopsy can be useful to distinguish it from clinical mimics such as psoriasis, discoid lupus, and rosacea. Prominent sebaceous gland atrophy without scarring has been well-described as an important and relatively specific clue for psoriatic or drug-induced alopecia. However, sebaceous gland atrophy is not specific to psoriasis and has been demonstrated in seborrheic dermatitis, facial discoid dermatitis, and potentially may occur in other inflammatory dermatoses of the scalp. We report a 23-year-old female patient presenting with non-scarring hair loss and histopathological findings demonstrating mild androgenetic alopecia and changes of seborrheic dermatitis with dramatic sebaceous gland atrophy. The patient had no history or evidence of psoriasis clinically. Our case suggests that in patients with seborrheic dermatitis, sebaceous gland atrophy may complicate the evaluation of alopecia biopsies and should be recognized as a pitfall. Seborrheic dermatitis should be included in the differential diagnosis of alopecia biopsies showing prominent sebaceous gland atrophy. PMID:38613429 | DOI:10.1111/cup.14623 {url} = URL to article
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An Bras Dermatol. 2024 Apr 12:S0365-0596(24)00037-0. doi: 10.1016/j.abd.2023.07.005. Online ahead of print. ABSTRACT OBJECTIVE: To evaluate the effects of rosacea on ocular surface changes such as alterations in dry eye parameters, corneal densitometry, and aberrations, in comparison with healthy controls. METHODS: A total of 88 eyes of 44 patients diagnosed with rosacea and 88 eyes of 44 healthy controls were enrolled in this cross-sectional study. All participants underwent a comprehensive dermatologic and ophthalmic examination and Tear Break-Up Time (TBUT) and Schirmer-1 tests were performed. The rosacea subtype and Demodex count and OSDI scores of all participants were recorded. Corneal topographic, densitometric, and aberrometric measurements were obtained using the Scheimpflug imaging system. RESULTS: The mean age of the 44 patients was 41.2 ± 11.0 years of whom 31 (70.5%) were female. The mean TBUT and Schirmer-1 test values were significantly decreased and OSDI scores were significantly increased in the rosacea group compared to healthy controls (p < 0.01 for all). The most common subtype of rosacea was erythematotelangiectatic rosacea (70.4%). The severity grading of rosacea revealed that 18 (40.9%) patients had moderate erythema. The median (min-max) Demodex count was 14.0 (0-120) and the disease duration was 24.0 (5-360) months. The comparison of the corneal densitometry values revealed that the densitometry measurements in all concentric zones, especially in central and posterior zones were higher in rosacea patients. Corneal aberrometric values in the posterior surface were also lower in the rosacea group compared to healthy controls. The topographic anterior chamber values were significantly lower in the rosacea group. STUDY LIMITATIONS: Relatively small sample size, variable time interval to hospital admission, and lack of follow-up data are among the limitations of the study. Future studies with larger sample sizes may also enlighten the mechanisms of controversial anterior segment findings by evaluating rosacea patients who have uveitis and those who do not. CONCLUSION: Given the fact that ocular signs may precede cutaneous disease, rosacea is frequently underrecognized by ophthalmologists. Therefore, a comprehensive examination of the ocular surface and assessment of the anterior segment is essential. The main priority of the ophthalmologist is to treat meibomian gland dysfunction and Demodex infection to prevent undesired ocular outcomes. PMID:38614939 | DOI:10.1016/j.abd.2023.07.005 {url} = URL to article
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