It can be isolating for people who live with one of more than 7,000 rare diseases, 90 percent of which don’t have FDA-approved treatments. That’s one reason why the National Organization for Rare Disorders reminds the rare disease community that one in 10 Americans live with a rare disease, and that together, they are 25 million strong.  

The national advocacy group encourages all those affected by a rare disease to “show your stripes” on Rare Disease Day, Saturday, Feb. 28. The zebra often is used as a symbol for rare disease because people who hear hoofbeats may expect to see a horse, not a zebra.  

Pulmonary hypertension is a complex disease that includes very rare types, such as pulmonary arterial hypertension, which affects about 30,000 people in the U.S. More prevalent types such as PH related to left heart disease or sleep apnea affect several million. 

Many people live with two or more rare diseases, such as connective tissue diseases, sickle cell anemia or sarcoidosis, to name a few. 

The Pulmonary Hypertension Association works to raise awareness of the increased risk for PH for those living with associated conditions and diseases. For example, the National Institutes of Health estimates up to 20% of people with scleroderma, 10% with sickle cell anemia and 12-34% with sleep apnea patients also develop PH. 

To help educate those at higher risk, the PHA presents a wide range of information on our newly redesigned website, including free video content, podcasts and brochures to order or download.