COPD resources: Where to find the information and support you need

COPD resources: Where to find the information and support you need

Chronic obstructive pulmonary disease, known commonly as COPD, is a condition that impacts more than 16 million Americans. COPD is a chronic, inflammatory lung disease that obstructs the airflow to and from the lungs, and common symptoms include a continual cough, shortness of breath, excess mucus, and chest tightness.For those living with COPD, their loved ones, and their care partners, we’re sharing some helpful resources to gain information and build community.

COPD leadership resources

For those diagnosed with COPD, advocacy organizations provide a breadth of support, including events, meetings, online communities, forums, and educational information. These organizations include:

The National Institute of Health’s (NIH) National Heart, Lung, and Blood Institute (NHLBI) division aims to provide global leadership for research, training, and education surrounding the prevention and treatment of heart, lung, and blood disorders. Through their work, they intend to enhance the health of all individuals so that they can live longer and more fulfilling lives. 

The NHLBI is also a good source for social media graphics aimed at increasing COPD awareness, which are designed to be used alongside their #BreatheBetter campaign. They encourage individuals to use this hashtag when posting COPD information so they can engage with the content, and also invite patients to join the Learn More Breathe Better program, aimed at promoting COPD resources and educating others. Their hub includes handouts and fact sheets for patients and caregivers and health and community professionals to download or order print copies. 

The American Lung Association (ALA) offers support for those impacted by COPD, providing a variety of resources and information about the disease. For over 40 years, their Better Breathers Club program has connected people living with lung disease to education, support, and each other in communities around the country. They hold meetings both in-person and online, in addition to hosting webinars. ALA’s library also includes videos and other resources for COPD patients and caregivers, and their support and discussion community Living with COPD is a place where members share advice for breathing problems, oxygen, pulmonary rehab, and more. 

The COPD Foundation, a non-profit organization, engages, educates, and empowers its community through a unique “360-degree approach.” They aim to forge relationships between patients, caregivers, healthcare professionals, researchers, academic institutions, government agencies, and industry leaders, with a core mission of preventing COPD, improving the lives of those affected, and stopping the progression of COPD. Their online community, COPD360Social, is easy to join and contains over 55,000 members. COPD Facebook groups and Reddit communities

Facebook groups are a great resource for connecting with others surrounding a common topic, and there are many groups designed for people affected by COPD. Here are a few examples of groups and pages:

  • COPD Information and Support is a private group created in 2015 and has now grown to over 16,000 members. It provides a place for people with COPD, Pulmonary Hypertension, and Alpha 1 to find and post information about their conditions. Questions are always welcome here. 
  • Let’s Talk COPD Support Group is a private group with over 8,000 members, and it is designed for people whose lives have been impacted by COPD. They encourage folks to share tips, educational resources, and personal anecdotes. 
  • COPD Exercise To Healthy Living is a private support group with 6,000 members. Its main focus is managing COPD through exercise, a healthy diet, and a positive mindset, but other topics of discussion include holistic health, herbs, journals, meditation, and ideas for coping with COPD. 
  • COPD Rehabilitation And Support Group is a group developed and managed by a group of clinicians, doctors, and respiratory therapists. Posts include discussions about COPD, connecting with others with the disease and sharing tips on how to breathe better at different stages of the condition. The group is private and has 5,700 members. 
  • Learn More Breathe Better is the NHLBI’s program to raise awareness of lung diseases and conditions, including COPD. They regularly post relevant information for the more than 53,000 Facebook users that follow them. 
  • COPD.net is a community where people affected by COPD can learn, share, and connect with peers and healthcare professionals. This page has over 45,000 followers and posts regularly. 
  • COPD Foundation is a community-based organization dedicated to improving the lives of those affected by COPD. Their page has over 29,000 likes with actively engaged followers. 

For those interested in joining a Reddit community, r/COPD is a space full of discussion, tips, and treatments that help those living with COPD. Members' posts cover topics related to support, articles, questions, and advice. The 2,700-member community discusses symptoms, coping mechanisms, diagnosis stories, treatment options, and more. 

While COPD can seriously impact a person’s life, research is happening every day to discover new and better ways to treat this condition — but studies can only advance when individuals take part. If you’re interested in moving the science surrounding COPD forward, search for a clinical trial using the tool below.