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Why have rosaceans gone over to rosacea social media platforms?


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Investigative Report on Why Rosaceans Prefer Social Media

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This post is about rosacea and social media platforms where all the rosaceans have gone and is an in-depth deep dive into this subject. Before we look at some of the data on this it would be good to go back in time and look at the history of the internet and rosacea, before the advent of social media.  

Sixteen years ago when the RRDi was founded by rosacea sufferers with the motive to form a grassroots patient advocacy group that could have a united voice to the medical community who at that time didn’t take any rosacea patient advocacy group for rosacea seriously because none existed. Does the medical community take seriously a united effort from any social media platform group on rosacea that is a grassroots patient advocacy group?  I will let you think about that question. 

There were two such organizations formed in 2004, one by David Pascoe (and others) and the other, the RRDi which involved myself (and others) who split into two camps. David Pascoe opted to using an html website for his non profit organization for rosacea and we opted for the Invision Power Board platform. David’s non profit, the Rosacea Research Foundation, was a similar grassroots organization that was more popular, raising $16K in a very short time and then quickly disbanded by the end of 2005, donating the entire money raised to the NRS, which was ironic, since both the RRDi and the RRF were formed because rosaceans wanted their own grassroots organization and were not happy with the NRS and its organization, how it was spending its donations, mostly on private contractors owned by one of the NRS board members, and very little on rosacea research.  But the glimmer of hope is that the RRF shows what can be done with a grassroots patient advocacy non profit organization. 

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The RRDi software platform was Invision Power Board which evolved into the Invision Community.

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The forum platform software was extremely popular back in 2004 and is still used today by many organizations and companies

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The RRDi eventually hosted the entire website and forum on Invision Community servers. The RRDi continued to grow with members (1.3K in 2020) and small donations and over the course of almost seventeen years we have received around $15.5K which is around $900/year in donations. We did spend about $6K on education grants sponsored by Galderma and the rest spent to keep the website going and legally continue as a non profit with registration fees and published one edition of our print on demand journal. It does cost money to keep a non profit organization going, even if no one is receiving a salary, no employees and no payments to private contractors owned by one of the board members. We don’t do that. Everyone is a volunteer. Pro bono. 

Then over the years the members and posts have dropped to nearly zero. We know we have traffic to our website because Google Analytics shows we do, nearly 4K visit our website each month, but they do not engage. So what happened? Where have all the rosaceans gone?  Back in 2004 there were many volunteers and they were working hard to create a grassroots, rosacea patient advocacy non profit organization. Where are they now?

Around the same time the RRDi was formed, Zuckerberg began Facebook, a social media and social networking service, with a different but similar platform as the ‘forum’ style platform and Facebook took off and exceeded all expectations and became the number one social platform. Others followed, i.e., Instagram, Twitter, Reddit and that list goes on. 

According to Search Engine Journal, in 2020 Facebook has 2.45 billion users, Instagram 1 billion users, Reddit 430 million, Snapchat 360 million, Twitter 330 million users, Pinterest 320 million, LinkedIn 310 million. So let's analyze where the rosaceans are on these social media platforms and what they are doing. 

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When you do a rosacea search on Facebook you can find where rosaceans have gone. The number one Facebook that comes up is the NRS with nearly 40K friends and 41K followers. 
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This non profit organization for rosacea has spent 10% of its donations on rosacea research over a twenty year period. 60% of the donations are spent on two private contractors owned by one of the board members. The Board Members of this Non Profit Organization are NOT rosaceans, and are comprised of businessmen (three), dermatologists (two), one RN, and a medical editor. For More Information. This non profit is heavily sponsored by pharmaceutical companies which is shown on its website if you scroll towards the bottom you will see the following:

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While this Facebook group is the most popular, do you consider this a grassroots patient advocacy group for rosacea or something else?

 

 

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As far as known, the Rosacea Support Group is the next largest Facebook group with 15K followers and 14K likes. It states clearly that this is a non profit organization but there is absolutely no evidence that RSG is registered as non profit. This is David Pascoe's group and his website is making money because there are affiliate links and sponsors for rosacea treatments but there is no evidence that this group engages in any rosacea research or has any influence on the medical community. 

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RosaceaFacts on Facebook has 18K followers and likes and is run by the pharmaceutical company Galderma. 

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The Rosacea Spanish Facebook has 6K followers and nearly 6K likes. 

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Rosacea Awareness says it is an actual 'community' and the official link is to StudyKIK.com which is a site for clinical trials. The about page at StudyKik says, "StudyKIK is the leading website where clinical trial companies list their studies and eager volunteers find them to sign up instantly." The Facebook ABOUT page doesn't explain who is running it but on the MORE INFORMATION link at the bottom of the page it links to its Instagram page that doesn't explain who this Facebook account belongs to but obviously it is somehow connected to StudyKik who say they are 'volunteers.' Nevertheless, 5.5K follow and like this Facebook Group. Do you think this social media 'community' has any influence on the medical community as a voice for rosaceans?  It has 13K followers and likes. 

If you know of any other rosacea Facebook groups which should be in this list, please find the reply button and let us know. 

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While there are rosaceans obviously on Instagram, figuring out which one is the most popular is difficult to say the least. Some of the ones who come up in the search box are #rosacea, #rosácea, #rosaceatreatment,  #rosaceaskincare, and this list goes on and on. For example, the NRS has an account shown below: 

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As previously mentioned about the NRS Facebook group and how this non profit represents businessmen and dermatologists who are the voice behind this organization and is not run by rosacea sufferers, apparently, the NRS Instagram isn't as popular with posts and followers as its Facebook group is.  If you know of an Instagram account that is more popular that should be mentioned, please find the reply button and let us know. There are rosaceans at Instagram but are any accounts representing rosacea sufferers as a united group that influences the medical community about rosacea? 

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Reddit appears to be the more popular social media website for rosaceans. There are 'subreddits' that are specifically made up of rosaceans while there are other subreddits that discuss rosacea, i.e., r/SkincareAddiction (1.2m members), r/30PlusSkinCare (124K members), r/medical (63.8K members), r/Accutane (29.6K members), r/AusSkincare (27K members) and others but we will mention one rosacea subreddit below: 

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You can see the number of members above in this subreddit and now lets try to figure out who runs this? Note below the results: 

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Does this give you an idea of who is running this huge subreddit?  Is this a registered non profit organization? Is it run by businessmen or medical professionals? What credentials are behind the moderators?  Why do they hide behind cryptic display names?  This gives you an idea of where the rosaceans have gone and rosaceans love it this way, behind cryptic display names. Do you think that this subreddit rosacea group with 21K members have any influence on the medical community to find the cure for rosacea or engage in any rosacea research?  

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Are there rosaceans on snapchat?  Did a search on 'stories' and got this result: 

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Did a google search with no results either. So if you know if there are rosacea sufferers on snapchat, can you please find the reply button to this post and tell us what you know. 

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Did a search on twitter with 'rosacea' and all sorts of 'tweets' come up but there isn't any one post that shows a united effort for rosaceans to come together into one cohesive patient advocacy group. Searched the 'National Rosacea Society' and discovered it has 3201 followers and 563 following on December 1, 2020  (which we mentioned about in Facebook and Instagram). Doesn't appear that there is any attempt with rosaceans to unite with twitter into one large group with a 'voice.' 

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Did a search on Pinterest using the 'board' as the choice and got a number of 'boards' shown below or you can see for yourself by clicking here

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The first one on the top left is Talonted Lex, a beauty blogger, who has rosacea and on Pinterest has 9.5K followers. The second one on the top row from the left is May Lindstrom Skin who has a  'lifelong battle with severe eczema and perioral dermatitis' with 2.6K followers at  Pinterest. The third one from the left top row is Clare Baucom who doesn't explain who she is but has 1.9K followers on her 'Rosacea Sensitive Skincare' and lots of over the counter treatments. This keeps on going but most of the 'boards' are selling over the counter treatments for rosacea. Do you know of any 'board' at Pinterest that is the voice of all rosacea sufferers in a patient advocacy united group that the medical community listens to?  

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Did a search on LinkedIn and not much happening with rosaceans at this social media business connection site. Professor Tony Chu started a charity named the The Acne & Rosacea Association UK with 57 members. Rosacea Care, who offers treatments for rosacea, is also listed. PCA who also offers treatments for rosacea is listed with 600 members. Not much happening with rosacea patient advocacy movements at LinkedIn. 

Conclusion

This is an in-depth look done in December 2020 searching where all the rosaceans have gone and they are happy posting in the above social media groups and could care less if there is any movement to create a grassroots rosacea patient advocacy group like the RRDi. So if you are happy with what is currently happening with where all the rosaceans have gone, good for you.

Et Cetera

What is your idea of what a rosacea non profit should be doing?

Comparing Non Profit Organizations with their Mission

How Non Profits Work

Volunteering Benefits

Grassroots Rosacea Non Profit Organization

Reply to this Topic

There is a reply to this topic button somewhere on the device you are reading this post. If you never heard about this topic and you learned about it here first, wouldn't it be a gracious act on your part to show your appreciation for this topic by registering with just your email address and show your appreciation with a post?  And if registering is too much to ask, could you post your appreciation for this topic by finding the START NEW TOPIC button in our guest forum where you don't have to register?  We know how many have viewed this topic because our forum software shows the number of views. However, most rosaceans don't engage or show their appreciation for our website and the RRDi would simply ask that you show your appreciation, please, simply by a post.  

 

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