Patients who suffer from pulmonary hypertension (PH) have high blood pressure which affects the arteries in the lungs and disrupts blood flow. Because of the increase in blood pressure, the arteries and capillaries become narrowed and blocked, and consequently, the heart becomes enlarged and weakened. With the progression of the disease, high pressure builds in the lower right ventricle of the heart. The result can be heart failure and death.
No cure currently exists for pulmonary hypertension, but treatments are available to help ease the symptoms and the burden of the disease. Numerous pharmaceutical companies, institutions and investigators work daily to improve treatments and find a cure while, at the same time, organizations and foundations focus on supporting studies, patients and patient families.
The Pulmonary Hypertension Association (PHA) is the world’s oldest and largest organization dedicated to all aspects of PH.
History Of The Pulmonary Hypertension Association
“From simple beginnings – four women who met around a kitchen table in Florida in 1991 – the Pulmonary Hypertension Association has evolved into a community of well over 10,000 pulmonary hypertension patients, caregivers, family members and medical professionals,” is how the association describes itself and its beginning.
In 1985, PH patient Dorothy Olson focused on finding other people suffering from the same disease. At the time, no more than 187 patients were diagnosed throughout the U.S.
After connecting in Florida, four PH patients started a support group which became the cornerstone of the Pulmonary Hypertension Association. In May 1990, the group sent a Pathlight newsletter to a network of patients, caregivers and medical professionals. By 1991, when the association finally launched, it had already grown from a local support group into a rapidly evolving national organization.
In 1999, the organization was hiring staff and its work involved patients, caregivers and PH medical specialists and other key people from the PH community.
“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.”
Pulmonary Hypertension Association’s Mission And Work
To find an end to the burden of pulmonary hypertension, the Pulmonary Hypertension Association focuses on preventative and curative methods and by offering hope through support, education, research, advocacy and awareness. The overall mission of the association is to improve the lives of everyone affected by pulmonary hypertension.
The organization maintains: “PHA is a community-based nonprofit that relies on donations to fund its many programs, including the nation’s largest PH patient and caregiver support group network, lifesaving early diagnosis awareness and education programs, specialty care resources, and research to find ways to prevent and cure PH.”
Throughout its history, the organization has remained remain attached to its original mission. It works daily to improve the lives of PH affected families, to end isolation, provide education, involve their constituents, and find a cure for pulmonary hypertension.
PHA is a 501(c)(3) nonprofit organization with more than 16,000 members and supporters.
Collaborating With The Pulmonary Hypertension Association
The Pulmonary Hypertension Association believes that through its activities, projects and programs in 49 American states, Puerto Rico and the District of Columbia, people give and get support. All endeavors strive to spread hope and information, and provide a sense of community within the PH community. PHA online efforts include discussion boards, email groups and online support group chats.
Patients and caregivers share stories of inspiration and help each other fight the disease, while everyone helps promote the common cause. Visits to Congressional representatives to lobby and advocate for PH causes continues.
While raising awareness, the PH community helps raise critical funding for PH research and programs.
Because of the importance of bringing forth knowledge from medical professionals to patients and families, the association is proactive by providing educational opportunities through e-learning events and its biennial international conference events.
The PHA aims to continue erasing global boundaries and further cement itself as the hub for PH associations worldwide.
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.