Nonprofit Organizations Pair Up During Sarcoidosis Awareness Month

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by Santiago Gisler |

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In-person support

The American Lung Association and Foundation for Sarcoidosis Research are working together during April’s Sarcoidosis Awareness Month to offer U.S. sarcoidosis patients and caregivers additional support, making available in-person support groups and online tutorials by specialists.

As part of the activities of Sarcoidosis Awareness Month, the associations welcome patients to the Better Breathers Club support groups. This program offers education for patients and caregivers on ways to manage chronic lung disease and improve quality of life, as well as provide a platform where people with similar conditions can support one another.

“Sarcoidosis is a confusing disease, and symptoms can come and go, making diagnosis difficult,” Ginger Spitzer, executive director of the Foundation for Sarcoidosis Research, said in a press release. “With a rare disease like sarcoidosis, nearly as important as healthcare is the emotional support that comes from learning and leaning on others impacted by this difficult disease.”

The idea behind these in-person support groups, led by trained respiratory therapists, is to provide patients with the tools to live active, healthy lives. The groups are in Chicago, Illinois; Indianapolis, Indiana; Jackson, Mississippi; Philadelphia, Pennsylvania, and New York, New York. Find out more about joining a Better Breathers Club on the American Lung Association’s website.

“Joining a Better Breathers Club showed me that I wasn’t alone,” said Debbie Davis, a sarcoidosis patient from Chicago. “While I learned about ways to better manage my sarcoidosis — including pulmonary rehabilitation — I also made friends, many of whom I now consider to be some of my closest friends and allies.”

During April, sarcoidosis patients and caregivers can also access online tutorials presenting the latest resources related to the disease. The two organizations are also providing access to the “Ask the Expert” series on the support community’s online platform Inspire.

Lisa A. Maier, MD, a professor at National Jewish Health research hospital, will be answering questions about sarcoidosis April 15-19.

Patients and caregivers can get more information and resources, such as live and recorded webinars, through the American Lung Association and Foundation for Sarcoidosis Research. A toll-free Lung Helpline is also available so patients can get one-on-one support from registered nurses, pulmonary therapists, and counselors at 1-800-LUNGUSA or through an online chat.