Advocates Prepare for Rare Disease Day

Advocates across the U.S. are participating in free state advocacy events now through mid-March in collaboration with the National Organization for Rare Disorders (NORD) to celebrate Rare Disease Day Feb. 28. Rare Disease Day is celebrated each year on the last day of February, a month known for having a rare number of days. What started as a European event has quickly spread worldwide. Today more than 90 countries celebrate Rare Disease Day.

One in 20 people will live with a rare disease at some point in their life. Most of these rare diseases have no cure or often are misdiagnosed/undiagnosed. Under these parameters, pulmonary hypertension (PH) is classified as a rare disease, which means PH advocacy is rare disease advocacy. This Feb. 28, the Pulmonary Hypertension Association (PHA) joins hundreds of patient organizations worldwide to raise awareness of rare diseases.

Join PHA’s advocacy network to encourage decision makers to address the needs of those living with rare diseases. If you attend a Rare Disease Day state advocacy event, share your experience with PHA at Advocacy@PHAssociation.org. In addition, follow PHA on Facebook (facebook.com/PulmonaryHypertensionAssociation), Twitter (@PHAssociation), Instagram (@PHAssociation), and LinkedIn (linkedin.com/pulmonary-hypertension-association) to catch the most up-to-date information on Rare Disease Day, and use #LearnAboutPH on social media to join the conversation.

2019-02-14T19:15:29+00:00 February 14th, 2019|