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Thanks to Pulmonary Hypertension Association (PHA) advocacy efforts, the Safe Step Act moves to the full Senate floor for the first time. “This is a huge step in the legislative process. While there is more work before this bill becomes law, PHA celebrates this milestone achievement,” says PHA President and CEO Matt Granato.
Pulmonary Hypertension Association President and CEO Matt Granato recently participated in the World Heart Federation forum on rare cardiovascular diseases. Matt represented PHA and the pulmonary hypertension community at the event in Geneva, Switzerland, with Lauren Janzen, a patient and advocate from Wisconsin.
More than over 80 people attended the Pulmonary Hypertension Association’s recent education workshop. PHA Connects: PH Community Workshop addressed medication side effects, chronic thromboembolic pulmonary hypertension and blood abnormalities associated with PH, among other topics. The free, daylong event, formerly known as PHA On the Road, also included support group meetings.
Join our panel of experts at 2 p.m. EDT Thursday, June 22 as they share their experiences treating and caring for children with PH. Panelists include health care professionals Rachel Sullivan, M.D., and Melissa Magness, M.S.N., APRN, CNP-AC, and parents Jayna Wall and Jeff Harpp. Discover practical advice related to school, activities, health care and more.
Hughes Elementary School showed its true colors for World PH Day when students and staff dressed in purple to support third-grader Isla Grey, who has PH. Isla’s class also raised $660 in quarters in April for pulmonary hypertension research. Isla’s mom Jennifer Morrow shares their story in the Right Heart Blog.
The pulmonary hypertension community observed World PH Day by sharing social media posts about symptoms, related conditions and facts about PH. Additionally, the Pulmonary Hypertension Association observed World PH Day with two in-person events May 6 and will continue its global awareness efforts throughout May.
A new-peer reviewed research paper showed that people with pulmonary arterial hypertension enrolled in the PHA Registry didn’t experience medication delays, increased emergency room visits or more hospital stays. The paper, which appeared in the April 18 issue of the Pulmonary Circulation Journal, is the 15th published paper based on PHA Registry data.
Learn how to maintain insurance coverage now that the COVID-19 public health emergency is over. Join the Pulmonary Hypertension Association (PHA) at 2 p.m. EDT, Wednesday, May 31, for a free webinar on Medicaid disenrollment. Jaeger Spratt, PHA’s advocacy and treatment access manager, will explain how states are removing beneficiaries from Medicaid plans and how you can navigate the system.
The New York City-Manhattan Support Group recently launched a book club to provide new opportunities for people with pulmonary hypertension (PH) to engage online. Leader Alicia Kubes started the support group in 2018 and has been expanding its focus since the pandemic began. The online group aims to discuss books through the lens of living with PH; patients throughout the U.S. are welcome to attend the June 9 meeting.
The Pulmonary Hypertension Association (PHA) recently updated its COVID-19 policy to reflect the Centers for Disease Control and Prevention guidelines. The policy focuses on individual responsibility at PHA events to use proven methods to reduce and prevent transmission.
