Good news and less good news: We’re closing the Raynaud’s Forum. But the good news is that our social media pages are more active than ever! As a result, we’ve found that our Discussion Forum just isn’t used much by fellow Frosties today. People prefer to find us on Facebook, Twitter, Instagram and our other social pages, and we think that’s terrific!
We started our Raynaud’s Discussion Forum 17 years ago before people were really using social media. At that time, our Forum offered a place where people living with Raynaud’s could ask questions, share coping strategies, and learn about new products all on our website. The original Forum grew to over 50,000 sign-ups and was a welcome place where Frosties could feel right at home with people who understood their issues and challenges.
When we updated the website in 2013, we opted to move the Forum to a much more robust platform with expanded capabilities. But it wasn’t possible to transfer the existing member records to the new environment, so members needed to create new accounts. By then our Facebook page activity was really growing, and the role of the Forum was somewhat diminished, but still attracted thousands of new and renewed members. Over the years, activity levels have declined significantly in direct proportion to our growth in social media.
In addition to declining participation levels, there are additional reasons why we’ve chosen to close this website feature:
Site Registration Confused With Membership – Posting in the Forum or commenting on our blog posts requires registration on our website. All of the content on our site is available to all visitors, while registration only offers the ability to post questions and comments. Unfortunately, people confused site registration with signing up for Membership. We have a separate Membership Form that adds people to our mailing list, but people would register on our website and think they’d signed up for Membership, or would fill out the Membership Form and wonder why they couldn’t login on our website. Now with only one sign-up option we can simplify the process.
Risk of Site Hacking – Hackers are everywhere, even when you take serious security precautions. While our data was never at risk, on several occasions bots launched by hackers were trying so hard to enter our site that it brought down our servers. It was our site registration that offered them a potential entrée. The fool-proof way to prevent this from happening would be to screen all site registrants to ensure they were real people with an interest in Raynaud’s. We preferred not to put our site visitors through this process, and – being an all-volunteer organization – also don’t have the staff to support extended screening procedures. Still this issue required regular scrubbing of site registrations to ensure the email addresses of new registrants weren’t categorized as spammers on third-party databases. By eliminating site registration, we’ve closed the door on these hackers.
Closing the Forum doesn’t mean we no longer want to hear from you or promote the exchange of ideas and questions within the Raynaud’s community. We’re just following your lead as you guide us to the places where you want to be heard and share with others. We now have over 20,000 Frosties following us on Facebook and receive an average of 30,000 to 40,000 impressions a month on Pinterest. Over 3,000 Frosties connect with us on Twitter. And while we’ve only been on Instagram a short time, we’ve grown in a year to over 400 followers. We even have nearly 200 Frosties following us on YouTube!
Thank you so much for offering the Raynaud’s Association! Your pamphlet is wonderful and reassuring.
By L. K. (CA)
Your Pamphlet Is Wonderful and Reassuring
Glad to find this page. Newly diagnosed…any ideas or experience would be so welcomed at this point.
by H.G. (Facebook Fan)
Glad to Find This Page
Thank you for the information…my daughter is suffering quite a bit but I think she is relieved that she is not alone and her pain is not in her head…We are both thankful for the support given and information.
by B.N. (Australia)
Thankful for the Support
Just discovered your site, I found it very informative, thank you.
by M.P. (Canada)
Thanks so much for having this page, I’d be so freaked out without you guys!
by L.D. (Facebook Fan)
I'd Be So Freaked Out Without You
Hi, I’m glad I found this page, it helps to know that others suffer from this, too…Thank you for your page : ) x
by S.C. (Facebook Fan)
Helps to Know Others Suffer, Too
I thank you guys for creating this page and working to help people who suffer with this like I do.
by K.M. (Facebook Fan)
Thank You for This Page
The Raynaud’s Association was my sanity saver!…It helped me and my doctor diagnose my Raynaud’s and continues to be my authoritative resource! The support I receive has been absolutely amazing!
by A. M. (Facebook Fan)
The Raynaud's Association Was My Sanity Saver!
They (Raynaud’s Association) helped me in so many ways. First, that what I had been experiencing for so long had a name and I wasn’t alone. I had not come across anyone that experienced it in their nipples,” she said.
By N. R. (AR)
Helped Me In So Many Ways
Thank you, Raynaud’s Association…I am glad that I’m not alone!
by I.C. (Facebook Fan)