Monday, Feb. 29, marked Rare Disease Day, an international observance of the importance of research on, and awareness of, rare diseases.
One of the thousands of companies worldwide to support Rare Disease Day 2016 was Sanofi Genzyme, pharmaceutical company and part of Sanofi’s specialty care global business division.
“Advancing education, research and treatment options in the area of rare diseases has been at the heart of Sanofi Genzyme since our business was founded 35 years ago,” Richard Peters, the company’s senior vice president and global rare diseases franchise head, said. “Rare Disease Day provides an important opportunity to further raise awareness of these debilitating diseases and the impact they have on patients and their families. Through events being held today, along with ongoing programs like Expression of Hope, we seek to amplify the voices of those impacted by rare diseases.”
The theme for Rare Disease Day 2016 was “Patient Voice.” In keeping with that theme, Sanofi Genzyme unveiled its inaugural “Expression of Hope” e-book, which included a decade’s worth of artwork created by patients living with lysosomal storage disorders -- a group of about 50 inherited metabolic disorders that result from defects in sacs of enzymes within cells (lysosomes), which digest large molecules and pass fragments to other parts of the cell to be recycled.
“Expression of Hope,” now in its 10th year, is an international initiative aimed at promoting awareness of lysosomal storage disorders, which mainly affect children. Patients usually die within a few months or years of birth.
To see the artwork, visit www.expressionofhope.com.