Rallying around the slogan “Rare Disorders without Borders,” individuals around the world today are marking International Rare Disease Day. Activities are taking place across Europe, Asia, Australia and New Zealand, and North America.
There are more than 6,000 rare diseases, including Spinal Muscular Atrophy, affecting more than 60 million people in Europe and the US alone. Most of these diseases are genetic, serious, chronic and debilitating.
FightSMA is doing its part by by developing the National Pediatric Research Network Act (NPRNA), which is aimed at combating rare pediatric diseases. The NPRNA of 2013 has already passed the U.S. House and is expected to be introduced in the Senate soon. It promises to directly benefit the fight against SMA by supporting collaborative pediatric research.
For more information about Rare Disease Day, click here.