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Everything posted by ak5790

  1. ak5790

    Final Appeal

    Hi, I have just come across this forum today (via the following page: https://rosacea-support.org/book-reviews#rosaceadiet) and became quite interested in the community. In terms of what the RRDI stands for today (this being patient-led and supported): the mission sounds great and quite admirable. As someone who is in my early 30's and got properly assessed and diagnosed with rosacea just back in 2017... I find the condition does not get nearly enough attention (especially considering that there is mild research that had taken place on important topics such as the possibility of a link between rosacea and autoimmune conditions: https://www.dermatologytimes.com/view/more-evidence-rosacea-autoimmune-link). This being said, as a new member it seems there are two main things missing: lack of awareness of the organization and therefore, lack of engagement. The first issue might be solved by collaboration with other grass-roots groups in either adjacent / related conditions or another dermatological condition of high prominence (for example, atopic dermatitis has been quite popular in recent years). The vehicle for collaboration and engagement could be as simple as social media (posting of recent articles on either topic and soliciting feedback that way). Thanks again for keeping this community alive. It is impressive to learn that RRDI has been going on since 2004 and I hope it will remain so. This condition is truly under-represented but the last thing patients need is another big group (such as the aforementioned NRS and AARS) that simply unites 'thought leaders' (in this case, physicians with clout) and the pharmaceutical manufacturers.
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