This post was authored by Richard Peters, Senior Vice President and Global Rare Diseases Franchise Head at Sanofi Genzyme
In many diverse ways, people around the world will mark Rare Disease Day today. Originally launched by the European Organisation for Rare Diseases (EURORDIS) in 2008, Rare Disease Day falls on the last day of February, which is very fitting this year as February 29th is the rarest day on the calendar. It is also appropriate because today is the kick-off day for the annual WORLD Symposium, focused on scientific research and clinical trials for lysosomal storage disorders, in San Diego, California.
Rare Disease Day motivates and inspires us not only as colleagues but as individuals connected to a large global community dedicated to improving the lives of people affected by rare diseases. The theme of this year’s Rare Disease Day, “Patient Voice,” clearly resonates with who we are – and who we’ve always been – at Sanofi Genzyme.
A decade ago Sanofi Genzyme partnered with the lysosomal storage disorder community to launch Expression of Hope, a global disease awareness program featuring works of art created by people affected by lysosomal storage disorders. This program enables patients, their families and anyone touched by a lysosomal storage disorder to add their “voice” to a growing movement dedicated to educating and mobilizing communities on behalf of rare diseases. To date, more than 450 people worldwide have told their stories through art.
In recognition of the 10 year anniversary of the program and in support of Rare Disease Day, we have launched a new Expression of Hope featuring artwork from the program along with short video interviews with several of our artists. This collection is dedicated to all those who have been touched by lysosomal storage disorders, who inspire us and the entire world through their perseverance, candor, courage and hope for the future.
I encourage everyone to take a moment today to view some of the works of art and listen to the artist interviews in our Expression of Hope collection. By doing so you will truly be helping to make the patient voice heard.