COPD360social: 40,000 Strong and Counting

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The COPD Foundation is thrilled to announce that we have recently reached our 40,000-member milestone for COPD360social, our online community, and that number continues to grow every day! This is a huge testament to all COPD360social community members and an immense sense of pride for members of the Foundation. We sincerely thank you for your ongoing participation and support – we need you to help us realize our mission to prevent and cure COPD and help everyone affected by this disease.

When COPD360social launched in November 2014, little did we know where we’d be today. As Bill Clark, Senior Director of Community Engagement and COPD360social community manager since January 2014, explains, “When we launched COPD360social, we weren’t really sure what would happen. We never envisioned that the community would become what it is today – the voice of the COPD community. It’s a place for everyone and anyone affected by COPD to ask and answer questions, share personal stories, give and receive support and express their joys as well as frustrations. It’s truly been a lifeline for our members and we couldn’t ask for more.”

So, what’s been the secret to the community’s success and its phenomenal growth over the years? “We’ve never had to advertise, it’s all been word-of-mouth,” says Bill. “And what’s interesting to see after all these years, community members not only make sure false or misleading information is quickly corrected and/or removed but many have also taken on several of my ‘official’ duties – whether it’s welcoming new members, reaching out to people who have been newly diagnosed, providing encouragement and advice and, perhaps most rewardingly, forming genuine friendships.”

Indeed, says Bill, one of the greatest things he’s noticed is the “many circles of friends that have formed over time. When a group doesn’t hear from someone for a few days, it’s very common for fellow members to reach out to that person, to check in and offer help. That’s one of the many things that makes this community so special.”

Community members also give and receive hope and motivate each other – whether it’s by encouraging each other to exercise, follow-up with their healthcare professional, look into pulmonary rehab or explore different treatment options. “It all comes down to the wellbeing of community members. People genuinely care and it shows,” says Bill.

“What’s also been nice is that as a community we haven’t gotten involved in any social issues outside COPD like politics, for example,” says Bill. “We’re all united and look out for each other. There’s no hidden agenda. It’s all about patients, caregivers and family members – and their lives with COPD.”

It’s not just the openness and enthusiasm of the Foundation’s community members, though, that have made COPD360social what it is today. It’s also about the technology infrastructure behind the community.

“Originally, I was looking at an external social platform that would benefit patients and caregivers alike and took the idea to John Walsh, the Foundation’s founder,” explains Bill. “Vincent Malanga, our Chief Information Officer, believed we could do this in-house, using our own platform. So, together with Sara Latham, Chief Operating Officer, and Fabiana Beltran, former Communications Director, COPD360social was born.”

If you know anything about building websites or online communities, you know that user experience is always top of mind and, in the case of COPD360social, this was no different. As Vinny explains, “We were very concerned about user experience. Traditionally, the Foundation’s website consistently provided a vast number of resources for anyone affected by COPD. When we thought about COPD360social, we didn’t want our members having to go to a separate website. Rather, we wanted to give our members all the resources they needed while simultaneously allowing them to talk to one another in a safe, comfortable and respectful environment – all on a single platform. This was very important to us.”

“COPD360social was built on John’s vision for the Foundation to be the ‘one-stop shop’ for all things COPD. We continue to honor his vision each and every day as we add features both to our online COPD360social community as well as the Foundation’s website in general. We have an immense knowledge base about what it is like to live with COPD and we hope to use this information in our search for a cure,” says Vinny.

In terms of actual numbers, then, what does this look like? “As of today, we have more than 40,000 community members, increasing by about 100-125 new registered members each week. Our members represent 145 countries with the top five being the United States, United Kingdom, Canada, India and Australia. Our membership is comprised of patients, caregivers, family members, friends and healthcare professionals,” says Vinny.

The COPD Foundation would like to give heartfelt thanks to all our COPD360social members for their ongoing support, participation and friendship. If you’re reading this and aren’t yet a member, please join us today – we welcome you – so that together we can find a cure.

12 Comments



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  • Thank YOU
    Reply
  • The COPD Foundation website has been a blessing to me since the first time I found it on the internet. Thank you, all of you, from the bottom of my heart.
    Reply
    • My sentiments exactly. I am a newbie and thankful to have found this group
      Reply
  • There IS something very special about COPD360Social. I've checked out other sites online and have not found anything else like it. I can't even begin to express how grateful I am for everyone here.
    Reply
  • I couldn't even find the right words to Express my gratitude for COPD360Social except to say Thank You, I love You Guys with all my heart Bill66
    Reply
  • This community satisfies all of my needs. I'm not a "social media" junkie, in fact the concept here of "friending" probably isn't all that important here. If I have a problem, and you know a solution, whether your a professional or fellow COPD'er - we're friends. Need to know how to use a new inhaler, click on the Blue box above and help is there.
    I started using O2 last fall. Neither my pulmo or provider taught me any more than how to turn it on. The community taught me how to minimize tangles, use it in the shower and numerous other "details" not described elsewhere.
    Can't afford your meds, the members have suggestions for alternative sources.
    The list goes on and on...
    ed

    Reply
  • What a great article. Thank you to everyone that makes this site possible. 360Social has been a life saver for me. I have learned so much here, a big part of which is how I can better self-manage. I laugh to myself a bit thinking about those first posts with people telling me that I should exercise. You can't say I didn't listen and it's been a real quality of life changer.
    Reply
  • As a caregiver, this site and all of the members were crucial to helping me to care for my mother and understand her disease. There are no words for just how thankful I am for everything that is the COPD Foundation and COPD360Social.
    Reply
  • Yes, COPD360social -- this is a very special place!
    Reply
  • I have a question. I now have COPD and had been diagnosed with lung cancer 10 years ago. I had stage 2 cancer. Removal of lover lobe and 16 lymph nodes. They have now found that I have a mucous plug in the same lung I had cancer in. Any thoughts?
    Reply
    • Hi Lainie - I'm not a medical professional, so am not able to make any suggestions, but you will probably receive more responses if you post your question in the Q & A section of the site.

      https://www.copdfoundation.org/COPD360social/Community/Questions-and-Answers.aspx

      I hope that someone will come along soon to help. In the meantime, I hope you'll click on the links at the top of this page - What is COPD and Learn More. I'm glad that you found us.
      Reply

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