The Pulmonary Hypertension Association (PHA) is the world’s oldest and currently the largest organization of its kind focused on fighting pulmonary hypertension (PH). But talking about the work of the organization or how it was born is not possible without first telling the story of the four women who met around a kitchen table in Florida in 1991 and changed the pulmonary hypertension field.
This year, the 25th anniversary of the organization will be formally commemorated, but the PHA began many years before when pulmonary hypertension sufferer, Dorothy Olson, was looking for other people going through the same journey. It was 1985 and there were just 187 patients diagnosed with PF in the US. Dorothy managed to reach out to three other PH patients in Florida.
The seed for the creation of the PHA was then planted by Dorothy Olson, Pat Paton, Judy Simpson and Bonnie Dukart. The four women decided to form a support group, but they soon realized it wasn’t enough. In May 1990, the group wrote a Pathlight newsletter and addressed it to a network of patients, medical professionals, and caregivers. By 1991, the association had been launched, starting from a small local support group it rapidly evolved into a national organization.
“PHA’s history is driven by a commitment to succeed beyond our numbers. It is the continuing story of what patients, family members, and medical professionals are able to do to change the history of a disease,” stated Rino Aldrighetti, the PHA’s president and its first staff member.
Just eight years after its launch, the PHA had begun to hire workers and it has continued growing ever since, determined to stay true to its founder’s views. “Our ultimate goal is to find a cure for pulmonary hypertension. We are empowered by the hope for that cure as we continue to build our community and provide more programs and services for those whose lives have been touched by PH,” explains the PHA.
Currently, the community-based and nonprofit organization has over 16,000 members and supporters. Relying on donations to finance its projects. Some of the most prominent PHA programs include lifesaving early diagnosis awareness campaigns, the largest PH patient and caregiver support group network in the country, as well as educational programs, specialty care resources, and research to find ways to prevent and cure PH.
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