People living with life-threatening, rare diseases — including pulmonary hypertension (PH) — struggle every day to raise their voices for better diagnosis, research, support and treatment. On Monday, Feb. 29, Rare Disease Day 2016, patients and caregivers will take to social media to celebrate the Pulmonary Hypertension Association (PHA) community’s recent awareness successes and demand meaningful action for PH patients and other people living with rare diseases.
PH, which affects children and adults, is high blood pressure of the lungs due to narrowing of the pulmonary arteries that can lead to death from right heart failure. Because PH is often misdiagnosed, for example, as asthma, the average length of survival without proper treatment can be only 2.8 years after diagnosis. For the past 25 years, PHA’s patient/family/caregiver community-focused strategy has served as a roadmap for rare disease awareness and action, pulling both patients and providers together and empowering them with knowledge and support. With PHA chapters and support groups across the U.S., the organization increasingly turns to social media and — in recent months — a national donated media campaign to connect the PH community, raise awareness and create paths to action for the 30,000 Americans diagnosed with PH, and many others who do not know they have the disease.
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