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Patients need full access to all PH treatments, advocates tell ICER

2024-01-04T10:56:00-05:00January 2nd, 2024|

Pulmonary hypertension advocates recently participated in an Institute for Clinical and Economic Review meeting about a new PH treatment expected to receive FDA approval in March. The advocates shared scientific information and personal insight about the impact of PH, the importance of robust insurance coverage for treatment and benefits of the new drug, sotatercept.

An author’s ‘survival guide’ to longevity

2024-01-04T11:11:46-05:00January 2nd, 2024|

Diagnosed in 1983, Gail Boyer Hayes is among the longest-living people with pulmonary hypertension. She authored the first three editions of PHA’s “Pulmonary Hypertension: A Patient’s Survival Guide,” the precursor to “Navigating Pulmonary Hypertension: A Guide for Newly Diagnosed Patients.” Her story initially appeared in the latest issue of Pathlight, PHA’s member magazine.

5 Great Reasons To Read the New Issue of Pathlight

2023-12-21T12:31:51-05:00December 11th, 2023|

If you’re a Pulmonary Hypertension Association member, you should have received the most recent issue of Pathlight. Our quarterly print magazine – exclusively for members – hit mailboxes in early December. This issue features inspirational stories from patients and caregivers. We also hear from health care professionals who attended PHA’s PHPN Symposium and those who work at new PH Centers of Comprehensive Care. Read on for a glimpse of what’s inside.

What Interested PHA News Readers in 2023? Find Out in Our Top 10 List

2023-12-21T12:32:34-05:00December 11th, 2023|

Emerging treatments, new understanding of PH and access to care rank among the top concerns of PHA News readers. Six of the 10 most-clicked stories of 2023 directly addressed those documents. Other posts that resonated with you featured first-hand accounts of patients’ triumphs and challenges in living with PH. Read the stories.

Discover PHA’s Top Social Media Posts of 2023

2023-12-21T14:57:36-05:00December 11th, 2023|

This year’s most popular Pulmonary Hypertension Association social media posts promoted PH awareness, patient stories, advocacy efforts and community events. We are thankful for our online pulmonary hypertension community. Through every comment, like and share, you foster relationships and raise PH awareness. We look forward to connecting with you online in the new year. See the list.

How PHA Spread Awareness in November

2023-12-07T10:05:13-05:00December 6th, 2023|

Throughout November, the Pulmonary Hypertension Association shared the stories of people who “Live PHearlessly” to raise awareness of pulmonary hypertension. More than 30 people with PH participated, including Esther Liu, Wendy McBride and Jamie Mykins. Others, such as Amy Burant and Nancy Zeppa, advocated for improved oxygen access by sharing their experiences. See their stories.

Summit Explores Ways to Improve Care Access, Research for Underserved Communities

2023-12-07T12:08:37-05:00December 6th, 2023|

A recent associated disease summit brought together the rare disease community to discuss challenges in increasing disease awareness and clinical trials participation among underserved communities. The summit, organized by the Pulmonary Hypertension Association, included representatives from 34 organizations.

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