PHA Supports Rare Disease Day with Social Media Awareness Push

Silver Spring, Md. (February 22, 2018) — The Pulmonary Hypertension Association (PHA) joins global partners, Feb. 28, Rare Disease Day®, to bring attention to the hopes and needs of people living with conditions like pulmonary hypertension (PH), an often misunderstood and misdiagnosed deadly disease. PHA will use social media to also highlight data indicating the links between PH and other diseases.

Congestive heart failure, connective tissue disorders, pulmonary emboli, COPD, scleroderma, lupus, pulmonary fibrosis, sickle cell, HIV and many other common and rare conditions can put people at risk for developing PH, also known as high blood pressure of the lungs. PH is a life-threatening disease that affects adults and children of all ages and ethnic backgrounds. It results in the arteries in the lungs becoming damaged, narrowed or stiffed and forcing the right side of the heart to pump extra hard, which eventually leads to right heart failure and death. Symptoms of PH are non-specific and include shortness of breath, fatigue and chest pain. Consequently, people with PH can go months, sometimes years, believing they have other less life-threatening illnesses, such as asthma.

Early and accurate diagnosis, quality care and appropriate targeted treatments available for two forms of PH — pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH) — can extend and improve the quality of life for many living with the disease. PHA encourages all Pulmonary Hypertension Care Centers (PHCCs) to participate in and build the PHA registry (PHAR) of newly-evaluated PAH and CTEPH patients diagnosed at their accredited centers. Data from the PHAR carries the potential to help the advancement of better, more targeted treatments for the future.

About the Pulmonary Hypertension Association

Headquartered in Silver Spring, Md., the Pulmonary Hypertension Association (PHA) is the country’s leading pulmonary hypertension organization. PHA’s mission is to extend and improve the lives of those affected by PH; its vision is a world without PH, empowered by hope. PHA achieves this by connecting and working together with the entire PH community of patients, families, health care professionals and researchers. For more information and to learn how you can support PH patients, visit and connect with PHA on Twitter and Instagram @PHAssociation and on Facebook at




2018-02-26T15:39:19+00:00 February 23rd, 2018|