Silver Spring, Md. (April 12, 2017) – The Pulmonary Hypertension Association (PHA) joins 80 global sister organizations on May 5 for Periwinkle Hearts Around the World, a worldwide campaign to raise awareness of the need for better access to care for people living with pulmonary hypertension (PH).
PH is a progressive, debilitating lung disease that can lead to death from heart failure. Common symptoms include shortness of breath, fatigue and chest pain. Consequently, PH is often misdiagnosed — for example, as asthma — leading to delays in proper diagnosis and treatment, costing patients valuable time. PH can exist alone or in association with other illnesses, including congestive heart disease, COPD, scleroderma, sickle cell and in some parts of the world, schistosomiasis, a parasitic disease carried by fresh water snails.
While approximately 25 million people are living with PH around the world, not everyone has access to the potentially life-saving treatments and care needed to manage this deadly illness. In recognition of World PH Day 2017, PHA and international PH organizations will take to social media to launch a month-long social media campaign to share realities about living with PH. Through the Periwinkle Hearts Around the World campaign, PHA and other organizations will share simple messages and memes that inform people about diseases associated with PH and share what life with PH looks like in countries and communities around the world. The memes and messages will lead people to WorldPHDay.org, a web site where people around the world can connect with the international PH organization closest to them. Stories shared via social media will live on the site beyond World PH Day.
“In many parts of the world, people living with PH do not have access to the 14 FDA-approved treatments that are available to people in the United States,” said PHA President and CEO Brad A. Wong. “Access to care is a concern not only for adults around the globe living with PH, but also for pediatric patients in the United States – for whom there are no FDA-approved therapies. Individuals who depend on patient protections in the U.S. also face challenges in access to care.”
WorldPHDay.org will lead people living in the U.S. to PHAssociation.org, where they will find PHA’s many resources, including support groups, informational materials, myPHA — PHA’s patient and caregiver social networking site — telephone support lines and toolkits for those who wish to engage with others in the community to fight PH. Health care professionals will find information about networking opportunities, PHA Online University, where they can earn CME/CE credits, and PHA’s PH Professional Network (PHPN) Symposium, an educational gathering for PH allied health care professionals – in and outside of the U.S. – which takes place Oct. 5-7 in Bethesda, Maryland.
PHA promotes awareness, education and research to advance PH care around the world through PHA Online University, its Advances in PH medical journal, which 50,000 physicians worldwide receive each quarter, Our PH Library and other PHA and PHA-partner resources, including PHA’s International PH Conference and Scientific Sessions, held during even number years, and the PHPN Symposium, hosted in odd-number years, to provide medical education and networking opportunities for non-physician clinicians. In addition, the global PH community will benefit as PHA continues to report data from its new PH Care Center accreditation (PHCC) and patient registry (PHAR) program.
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 www.PHAssociation.org and connect with PHA on Twitter and Instagram @PHAssociation and on Facebook at www.facebook.com/PulmonaryHypertensionAssociation.