Approximately 30 million Americans are affected by rare diseases, which is why every year on the last day of February, we celebrate “Rare Disease Day.”
Story updated on 04/26/2017
Spark Therapeutics commemorated Rare Disease Day 2017 with fanfare in Philadelphia!
We started the day celebrating Mayor Jim Kenney’s proclamation that the last day in February is now officially Rare Disease Day in the City of Philadelphia. Back in our home offices, we gathered together for a viewing of the documentary, Rare in Common. Probably the most rewarding event of the day, however, was the opportunity to hear from those living with inherited retinal diseases in a company-wide event. Many thanks to Dr. Chris Moen, President of the Choroideremia Research Foundation, and Laura Manfre, President and Co-Founder of Sofia Sees Hope, who joined us for our Rare Disease Day panel. Their insight and generosity in sharing their perspective with Spark Therapeutics infused the day—and our work—with even deeper meaning.
Original Story Published on 2/20/17
Inherited Retinal Diseases are rare conditions. In fact, retinitis pigmentosa—one of the most common inherited retinal diseases—only affects approximately one in 3500 people in the U.S. Despite this rarity, you are not alone! No matter which condition brought you into the IRD community, you are connected to each other by shared experiences and hope that research may lead to potential new treatment options. And on February 28th, in a call to action on International Rare Disease Day, you can add your voice to the millions of individuals worldwide also living with a rare disease.
Rare Disease Day was first launched in Europe in 2008 by the European Rare Disease Organization (EURORDIS). The following year, the National Organization for Rare Disorders (NORD) became a partner to extend the initiative into the United States, and groups from several other regions participated as well. Today, over 100 countries host Rare Disease Day events, with more getting involved each year.
Advocacy is the goal of this annual, international campaign, according to information on the EURORDIS website:
“The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.”
Every year, a different theme unifies activities taking place worldwide. This year’s Rare Disease Day slogan focuses on research: "With research, possibilities are limitless."
We encourage the aSharedVision.com community to help make the voices of those living with rare retinal diseases heard. If you are interested in policy issues, there is a week of activities in Washington, D.C., supported by the Everylife Foundation for Rare Diseases. Many states hold activities at their state house, where members of the rare disease community are welcome to join. For a list of general activities in your state, or to find other ways to participate virtually or via social media, please visit NORD’s Rare Disease Day U.S. website.