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April 2, 2012 - Numerous organizations from around the globe that are focused on supporting people with lesser-known medical conditions came together to shine a big spotlight on World Rare Disease Day on February 29, 2012. The Foundation Fighting Blindness joined the effort because most retinal degenerative diseases—with the exception of age-related macular degeneration (AMD)—are considered “rare” because they affect less than 200,000 Americans. With the theme of “rare but strong together,” the awareness day called attention to the 30 million (one in 10) Americans coping with one of nearly 7,000 known rare diseases.
Engaging Local Media to Reach Millions
As part of the Foundation’s Rare Disease Day campaign, members were encouraged to submit a letter to the editor, meant to educate readers about vision-robbing conditions, to their local newspaper. A template letter was provided on the Foundation website, along with instructions for how to personalize the letter and submit it to a local newspaper. Many members took action and at least seven letters were published in newspapers around the country, including Cleveland’s Plain Dealer and Chicagoland’s Daily Herald. The placements reached an estimated 6 million people in print and online, highlighting the importance of research and the Foundation’s pursuit of treatments and cures.
While Rare Disease Day was a timely reason to call attention to retinal degenerations, outreach to local media can happen throughout the year. Check out new template letters to the editor now available that can be customized and sent out anytime through our easy-to-use online platform. In just a few quick steps, you can contact local newspapers to share your story and encourage others to get involved in the fight against blindness.
Signing on to Support the Push for a Cure
More than 1,300 Foundation Facebook fans also took action for Rare Disease Day by signing an online petition to members of Congress, letting them know we’re serious about bringing much-needed attention to lesser-known retinal conditions. Government support for medical research through funding the National Institutes of Health (NIH) is an important part of advancing treatments, so it’s exciting that so many Foundation members came together to have our voice heard as Congress makes critical funding decisions.
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