Educational website offers resources for people with PH

Team PH is using experts for content on the website 'Learn Live Breathe PH'

Lindsey Shapiro, PhD avatar

by Lindsey Shapiro, PhD |

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Team PHenomenal Hope — Team PH — a nonprofit organization seeking to raise awareness about pulmonary hypertension (PH), has launched an educational website for people newly diagnosed or who are living with the rare disease.

The site, called Learn Live Breathe PH, was launched Feb. 28 in observance of rare disease day.

All of its content is written by experts in the field, spanning topics such as diagnosis, treatment, mental health, and nutrition, among many others.

“I am so eager to see this website go live,” Patricia George, MD, co-founder of Team PH and a content writer for the new site, said in a press release on the day of the launch.

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George, the director of the PH program at National Jewish Health in Colorado, says the site was created to “help empower people throughout their journey with pulmonary hypertension.”

The site contains informational articles and printable infographics about basic PH information, types of PH, diagnosis and treatment. One section, titled “Managing Your Care,” was written to help guide people right after receiving their PH diagnosis.

Other webpages are aimed at people in all stages of their PH journey, with information about different facets of living with PH including nutrition, exercise, sleep and mental health.

Through Learn Live Breath PH, people also can connect to a virtual support group program hosted by Team PH. It meets via Zoom on Tuesdays every other month.

At these sessions topics relevant topics to having PH will be discussed with invited guests.

An upcoming session will be held 1-3 p.m. CST March 14; online registration is open now. Titled “Conversation about Wellness and Yoga with PH,” it will be led by Rana Awdish, MD, medical director of the PH Program at Henry Ford Hospital in Detroit.

Previous topics include, “When Family and Friends Just Don’t Get it,” “Navigating Insurance and Copays,” and “Preparing for Doctor and Hospital Visits.”

For individuals who want to get involved in PH advocacy, the site offers ways to join Team PH, and other organizations including PHaware, and the Pulmonary Hypertension Association in their efforts.

Team PHenomenal Hope started as a single cycling team in 2012 and now has athletes all over the world competing in races to raise money and awareness for PH.

The organization has since expanded its efforts beyond racing, and now hopes the Learn Live Breathe website will offer reliable resources for the PH community.

“We wanted to create something with solid information in a crisp site that is easy to navigate, and I hope that this does that,” George said. “I look forward to seeing it continue to evolve in the years to come.”

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