The heart and soul of the COPD Foundation, COPD360social, reaches 50,000 members
Posted on March 08, 2021 |
This article was written by Susan Williams, Senior Director of Communications, Bill Clark, Vice President of Patient Experience and COPD360social Community Manager, and Vincent Malanga, Chief Information Officer
On March 4, 2021, the COPD360social community, a peer-to-peer online platform, reached a milestone: 50,000 members. COPD360social is an integral part of the COPD Foundation’s revolutionary COPD360 technology platform that provides visitors with a "one-stop shop" experience in everything COPD including educational materials, blogs, research, and a large searchable database for questions relating to COPD.
John W. Walsh, founder of the COPD Foundation believed that patient voice and documenting patient experiences was vital to bringing awareness to a disease that has often been overlooked, underfunded and misunderstood. It was for these reasons COPD360social was born. Chief Information Officer Vincent Malanga was tasked with the development of a platform where patients, caregivers and medical professionals could interact freely and safely to share honest and factual information, thoughts and insights, even photos.
A team of staff members and patients was enlisted to design community guidelines and structure so that the new community would work seamlessly with the COPD Foundation website. What was not anticipated at the time was that we were giving birth to what evolved as a large vibrant growing community with membership from over 151 countries; a place where members share all aspects of their daily life, gain new friendships; where people living with COPD can connect with and support each other in the knowledge that they are never alone. COPD360social has become a model that other patient communities all over the world aspire to be.
The global medical community has taken note and look to COPD360social for patients’ insight and concerns fueling new and exciting groundbreaking research and development that will ultimately improve patient outcomes and quality of life. The patient voice is now being heard and it is changing how COPD is being treated.
"COPD360social is a safe place to come learn, share and speak with others about the challenges that come with COPD and how others have solved them. It is also a place where the community shares more than just COPD…they share their everyday life, laughter. Joys and sorrows, recipes, games, music and pictures just like friends do." - Bill Clark, COPD360social Community Manager
A new COPD360social member recently said: "Since this is so new to me, I am hoping to learn more about COPD, from people that actually have COPD, and how to understand, when I am actually having a Flare-Up."
Other members wrote: "Unfortunately, there is a lot of misinformation out there about COPD. What you find here is correct."
"I want to thank everyone for helping me come to grips with my diagnosis. When I first got the diagnosis I was devastated, but thanks to all of you help I am learning to live with this disease."
"I know nothing about COPD and here in Germany ppl don’t talk/share much about their own illness. I’m really happy to join this community."
"I know how scary it is and I have no one to talk to about it … until i came here. I feel and I see hope here; we are all in this together."
The milestone we celebrate today is just the start of many milestones to come. Today in the United States, there are 30 million people living with COPD. It is the fourth leading cause of death in the US. As Dr. Jean Wright, a member of our Board of Directors, recently noted in her TEDx presentation, COPD is an invisible and growing epidemic. There is much work left to do and new needs to be met and the COPD Foundation with the support of our amazing community will continue to find the answers.