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What Community Support Means To You?


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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 forummember 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 green 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. 

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  • Root Admin

Thought I would continue this discussion and try to stimulate any member to weigh in on this with further thoughts on this subject. We have 1333 members as of this date and basically hardly anyone is posting anything. Only a few, and I mean a few have ever posted anything in the last few months except me. Apurva Tathe, a board member, is the second most active member on the website. I have tried to gather rosaceans together to be united in doing something about rosacea but the members are silent which is so sad to me. I have repeatedly asked members to discuss why anyone thinks that a rosacea sufferer would go through the registration process and then not even make one post. There are spammers who join but we have taken the extra precaution of approving each post before it goes live because when we allowed anyone to post a spammer posted a bunch of posts on Viagra and Twitter suspended the account and I have repeatedly tried to get Twitter to unsuspend our account with no success. Twitter is one social media account that doesn't have a good help feature and ignores pleas to activate the account. If you would like to volunteer to straighten out this mess I sure could use the help. Are you a Twitter guru? I need help. 

So I locked the forum and each post has to be pre-approved so we don't get spam. The last four members that joined have these user names: 

Buy Kamagra Uk
rtstar
Kamagra4U
Kamagra Cheap

I think you get the idea. Obviously rtstar is the only legitimate member out of the four. So we try diligently to make the RRDi Forum a safe place where you won't have to see posts about viagra, kamagra, porn or other advertisements or links asking for your money. Wish someone would actually volunteer to be a moderator who could assist in all this. We have had volunteers who said they would be a moderator but have since become inactive. Can't even reach them by emai.

Most of the data on rosacea has been collected since 2004 into posts/pages and categorized in logical subjects for your benefit either in the forums or on the site index. Many of the sources for anecdotal reports or subjects show the Rosacea Forum (rosaceagroup.org) with a link to RF because many years ago the RRDi had a sister relationship due to the fact that the original owner of RF, Warren Stuart, served on the board of directors of the RRDi and was also instrumental in setting up the RRDi website with Invision Power (now called Invision Community) back in 2004. We have continued to do this since the new owner of RF, David Pasco, has graciously allowed me to not only post at RF but to also refer to posts at RF with links on the RRDi website. Hence, RF has a wealth of rosacea knowledge that should be preserved, mainly for historical reasons, but also because there is a lot one can learn at RF since it has still remained somewhat active after all these years (currently about 145 active members). 

To me the RF website uses basically the same interface as the RRDi website but some have told me that RF is more user friendly than the RRDi which I don't get, but obviously they do since they tell me that. So we paid for a private forum through Tapatalk who hosts rosaceans.org and we are not getting any activity over there and only a handful have joined it and never post. We will probably be dropping this by the end of 2020 since it costs $120/year to maintain it. We did this because supposedly the Tapatalk forum is the latest, state of the art 'forum' and is totally private. 

The list of famous rosaceans continues to grow and not one of them has joined our cause, which is one of my wish lists. Of course, my biggest wish is for a rich donor to donate enough money so we can last another year or so. At the present rate we will dissolve some time towards the end of this year. I made this post in March to no avail and sent out the latest newsletter asking for a donation. I have been writing some fairly interesting posts and spent some time working with Model Tees to offer tee shirts (please be a rosacea warrior). 

So, what is it that the RRDi should be doing that is not listed in this post and the previous post?  What needs to be done to unite rosaceans into one rosacea grassroots non profit organization that can have an impact on the medical community to take us seriously as a rosacea patient advocacy group? Can someone with a little hutzpah please post a thought?

Furthermore, I have posted a lot about comparing non profit organizations with their mission and point out how few non profits spend very little on their mission and spend most of the donations on salaries, compensation to members, or private contractors. Can you comment on why you think rosaceans don't care about any of this? 

 

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