Our History

A Period of Rapid Development

PHA began to question whether its tireless volunteers could continue to provide the sole support for its expanding programs and services. The need to hire a staff member became increasingly apparent during this time of rapid growth.  Rino Aldrighetti was hired as PHA’s first staff member on January 1, 1999. Rino helped to facilitate the growth of PHA through strategic planning and fundraising at a critical time for the organization.

PHA expanded its strategic scope to include research efforts in addition to the support, education and networking services for its constituents. PHA created a Research Fund with the purpose of raising money for research and increasing public awareness of PH.

Beginning in 1999, PHA held golf tournaments in Houston and Dallas to continue to foster public awareness of PH, support research and sustain its growing programs. The value of these events was undisputable; PHA raised over $130,000 that first year, and awareness of PH surged.

PHA’s fervent awareness efforts drove individuals to the PH community. In order to keep up with the growing constituent pool, PHA installed a new database. At this time, new support groups were added at an average of one per month and the patient support line calls increased substantially.

Instrumental advocacy efforts in Congress heightened PH awareness as well. Representative Kevin Brady (R-TX), motivated by his personal connections with several PH patients in his district, introduced the first PH-specific bill in Congress in 2000. Several years later, the late Representative Tom Lantos (D-CA) joined Representative Brady in introducing a new PH bill. These efforts pushed PHA toward closer relationships with Members of Congress, intensifying support for PH legislation.

The PH Professional Network (called PH Resource Network at the time) was formed as a part of PHA in 2000 in order to build a network among medical professionals who work with PH patients. This network was essential during a time when patient diagnosis was growing, clinical trials were expanding and the Food and Drug Administration was beginning to approve more treatments for PH. PHA organized its first educational forum for nurses and other allied health professionals in 2003, called the PH Professional Network Symposium. In 2004, PH Doctor, later renamed PH Clinicians and Researchers (PHCR), was established as the world’s first professional association for PH-treating clinicians and PhD-level researchers. The additions of PHPN and PHCR accelerated collaboration and information-sharing among the medical community.

Rich dialogue within the PHPN and PHCR communities served as a catalyst in the development of PHA’s medical education programs. PHA launched the first series of regional medical education programs in 2005, consisting of seminars held in various cities that educated medical professionals and patients alike. These seminars allowed PHA’s constituents to access vital medical information from internationally recognized experts and connect to each other in what was becoming a rapidly growing field.

The external growth of the PH community steered PHA toward internal expansion. The success of the International PH Conferences led to the development of the International Services Program in 2004, which supported connections with PH associations across the globe. In 2009, PHA began to work with members of the PH community to expand programming among special populations of PH patients and caregivers. PHA developed the Patient Outreach and Services Department to help identify and prioritize the interests of these groups and create resources to meet identified needs.

What started as a small support group at a kitchen table became a dynamic organization composed of over 13,000 members only 20 years later. In 2011, the annual budget increased to over $10 million. PHA’s original one-page newsletter, Pathlight, grew to a 55-page quarterly publication. PHA worked closely with more than 50 PH associations around the world. PHA earned Charity Navigator’s four-star rating eight years in a row, the highest recognition conferred by the leading charity evaluator in America. Though PHA expanded far beyond its original framework, it retained its grassroots, altruistic focus through the dedication of its hardworking volunteers.

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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.