Rare Disease Day was started in 2008 by EURORDIS, and held on February 29th, the rarest day to raise awareness for the rarest diseases. The event began in Europe with 18 countries participating, but today events are being held in over 80 countries all over the world.
Each year the event brings a different theme designed help spread awareness about rare diseases, and to, according to a press release, “call upon researchers, universities, students, companies, policy makers and clinicians to do more research and to make them aware of the importance of research for the rare disease community.” The theme of this year’s event is “With research, possibilities are endless.”
Hundreds of events around the world are being held to help achieve the goal of raising awareness. In the U.S., these events range from virtual events like a social media campaign or a virtual walk-a-thon to legislative events that equip people to meet face-to-face with officials to advocate for legislation.
The events are being held all over the world, but many are not only limited to one day. Some, like the walk-a-thon, are being held all month. Getting the word out on social media can be done at any time.
And even if there are no specific events being held in a given area, pharmacists can always help to raise awareness about rare diseases and disorders. The Rare Disease Day website is full of resources like posters and flyers to help spread the message that pharmacists care about this issue.
Pharmacists and pharmacy staff can visit the websites of organizations like the National Organization for Rare Disorders to learn more about what qualifies as a rare disease and how people with these diseases cope. They can also learn about the role of the pharmacist in helping them.
A rare disease is any disease that affects less than 200,000 Americans at any given time. Rare diseases are rare, but they are numerous—altogether there are 7,000 rare diseases and they affect 1 in every 10 Americans.
Learn more about orphan drugs. Learn how you can spread awareness. Learn what needs to change to provide access to treatment and care. Learn how rare diseases are affecting the people in your community. And when you do participate in these events, let us know! What are you doing to make an impact? How are you participating today, tomorrow, in the future? Find us on Facebook or tweet @Drug_Topics. We’d love to hear from you!