Rare Disorders Without Borders
Rare Disease Day is February 28, 2013
Genzyme, a Sanofi company, is a proud supporter of Rare Disease Day, an international initiative coordinated by the European Organization of Rare Disorders (EURORDIS).
Imagine being diagnosed with a chronic, debilitating disease whose name you’d never heard of before, a disease so rare that it may have taken medical professionals years to accurately pinpoint the diagnosis, a disease that affects only a few thousand or even a few hundred people around the world. Where do you turn for information and support?
Rare Disease Day, commemorated annually on the last day of February, is one way to overcome the isolation that often accompanies having a rare disease. While each disease impacts a small number of individuals, there are over 6,000 rare diseases affecting more than 60 million people in Europe and the U.S. alone, and Rare Disease Day can build global communities and connections among many of these patients. In addition, the day encourages decision-makers and the general public to learn about rare diseases, develop an understanding of how they impact patients’ lives, and stand in solidarity with those affected.
For Rare Disease Day 2013, EURORDIS chose the theme “Rare Disorders Without Borders” to emphasize that international cooperation is essential for fighting diseases that affect only a few people in each country and for which expertise is scarce and scattered.
As a pioneer in the field of rare genetic diseases, Genzyme has supported Rare Disease Day since its inception in 2008. In line with the global theme for 2013, Genzyme locations around the world are participating in a variety of Rare Disease Day initiatives.
The company’s signature event is an Olympic-style torch relay run with a virtual passing of the torch from Genzyme’s European headquarters in Naarden, the Netherlands, to a manufacturing facility in Waterford, Ireland, to the Science Center in Framingham, Massachusetts. Once the torch is in Framingham, Genzyme employees will run through Massachusetts to deliver the torch to three additional Genzyme sites: Waltham (R&D), Allston (manufacturing), and Cambridge (Genzyme Center, corporate headquarters).