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  • Corporate Membership is open to the public and rosaceans are welcome

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    1. RRDi members must be polite and respectful to fellow members taking into consideration the individual fellow member's religious, ethical, and cultural values, as well as age, race and sex. The institute determines what is polite and respectful and may or may not give warnings for violating this rule. Removal from the membership is possible for violating this rule. It is a privilege to be a member of the RRDi and not a right.

    2. To be a legal corporate voting member a name, mailing address, two email addresses, and a statement of whether the member is a rosacean or not a rosacean is required. Non voting members are only required to provide a valid email address. 

    3. Members may not profit from the institute; however, any Medical Advisory Consultants (or Committee) member or any other member may be compensated for services rendered to the institute.

    4. Members who sell items or services for rosacea may comment on a treatment, product, book or service sold by the member when another member asks for information. However, the institute may at any time stop the discussion, delete the posts or ban the member at the sole discretion of the institute. Warnings may or may not be given to the member by the institute. Profiting from contacts of fellow members through the institute is not the purpose of this non profit institute. However, information is acceptable to post when asked and appropriate comments are allowed subject to the approval by the institute. The RRDi determines if the post is appropriate or not and you agree to this decision.

    5. Voting members should state if they have a diagnosis of rosacea from a physician and failure to discuss this may be grounds for dismissal as a member. The institute needs to know which voting members are rosaceans to determine the percentage of voting members who have a diagnosis of rosacea from a physician and which voting members are not rosacea sufferers. Non voting members are also required to state if they have a diagnosis of rosacea if another member inquires.  

    6. Privacy is of concern to the institute. Names, mailing and email addresses are not given out to the public or to fellow members by the institute. Your public profile is available to anyone to view but only shows your location, country, and whether you are a rosacean if you put data into these public profile boxes. Your personal profile like first and last name, etc., is never shown to the public and only RRDi staff members can view your personal profile. You agree to allow your public profile to be shown. Members should not release names, mailing or email addresses of fellow members if you are aware of the personal contact information of a fellow member without the consent of the fellow member. A Privacy Policy is available for the public. Members who donate to the institute will be listed with their name and the amount unless the donor requests anonymity. If you want to remain anonymous please let the institute know when you donate otherwise your name will be posted without any address, phone, or email address.

    7. Members will adhere, agree to and obey the Guidelines, Charter, Articles of Incorporation, the Bylaws, the Conflict of Interest Policy and these Rules of the Institute. Violation of any of these rules may be grounds for being removed as a corporate voting member or non voting member. You may view these documents by request or check the site index.

    8. A 'rosacean' is a rosacea sufferer. 'Institute' refers to the RRDi. RRDi refers to the Rosacea Research & Development Institute. You accept these terms.

    9. Anyone can join as a non voting member and post in the forum without providing any contact information other than a valid email address. All these rules also apply to guests who are not registering an account in our feedback forum

       10.  The Rules of the Institute may be changed at any time at the sole discretion of the institute. 

     

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    • One of our members came to the rescue so we are still in this for at least another year! Our financial page is transparent and you can view how we spend our donations. Our next project is to figure out how to get our members to be active. The first step is recognizing active vs inactive members. 
    • The RRDi is now showing the active members vs the inactive members since the non voting and the voting members haven't been engaging in any rosacea discussion for some time now. This has created a relatively inactive forum 'engagement' with fellow rosaceans which is really core to our mission (view the RRDi Mission).  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 1.4K members are not engaging in any discussion, we will be informing 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 to the site will be visible to what a 'guest' user will be able to see. A member who is inactive may still post in the areas guests are allowed to view and automatically becomes an active member again.  Active members will be able to view more content on our website about rosacea for thirty days and can enjoy the content. If they want to continue to view the content they must at the minimum continue with at least one post, hopefully with some meaningful contribution to their fellow rosaceans who have joined the community, contributing to our Goal #7 mentioned above.  ACTIVE MEMBER If you are a current non voting or voting member and not able to view certain parts of our website for content simply post something about rosacea or what you are using to treat your rosacea to become ACTIVE again. Or use our contact form if you have recently posted to become active to view more content and we can restore your active status. Request that your inactive status be upgraded to ACTIVE member status so you can view more rosacea content on the RRDi website. We will be happy to restore your active status once you have posted which gives you thirty days to view the rosacea forums for rosacea content. To continue as an active member requires you post at least one post a month which shows you are active and that encourages your fellow rosaceans to also be active since you are setting an example.  Another way to become active is donate one dollar. That surely shows activity and we will happily change your status to an active member for thirty days.  Inactive Members Can Still Post! How can inactive members post and become an active member again?  Simple. Find an area you would like to post something, For example, one area still open to inactive members and guests is the FAQ forum. Pick any FAQ and login to your account and post something. That makes you active again! You can post in any area still open you once you have logged into your account. 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.  New Members If you are a new member you will remain as INACTIVE until you post which then automatically makes you an ACTIVE member. As long as you remain a lurker you remain inactive and have access to all the forums for thirty days. At the end of thirty days you will then be an inactive member with guest privileges able to post in areas of our forum still accessible to you. 
    • Investigative Report on Why Rosaceans Prefer Social Media 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.  The RRDi software platform was Invision Power Board which evolved into the Invision Community. The forum platform software was extremely popular back in 2004 and is still used today by many organizations and companies.  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.  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.  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: While this Facebook group is the most popular, do you consider this a grassroots patient advocacy group for rosacea or something else?     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.  RosaceaFacts on Facebook has 18K followers and likes and is run by the pharmaceutical company Galderma.  The Rosacea Spanish Facebook has 6K followers and nearly 6K likes.  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.  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:  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?  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:  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:    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?     Are there rosaceans on snapchat?  Did a search on 'stories' and got this result:  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.  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.'  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.  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?     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.    
    • 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?  If you scroll past the next section about downloading our beta versions of our mobile app you find two successful medical companies using the Invision Communities 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 two options for you:  (1) Watch this short video about social media rosacea platforms (2) Download either the Apple iOS or the Android mobile app to your device which is discussed next.  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 now announced beta versions of iOS and Android apps 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.  Medical Clients Who Use Invision Community Platform 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.  
    • Invision Community "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 this over the 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! 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 group, i.e., Facebook, Instagram, Reddit, Twitter, etc., make all the rules and you have no choice who runs the group. Whoever 'owns' the group makes all the decisions (rules) and are not grassroots decision making. There are few, if any, social media groups that are grassroots, letting the members make the decisions on how the social media group is run. 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 how the donations are spent (each board determines how the donations are spent). Follow the money (where does most of the donations 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 might that subject be? 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 board members with a top down decision making process.  And rosaceans prefer and love it that way. Do these social media rosacea private groups engage in any rosacea research? What do you think? 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.  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. 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.   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  Rosacea Research in Perspective of Funding
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