Five Things You Should Know – About Rare Diseases
- There are nearly 7,000 identified rare diseases, affecting 35 million Americans and more than 350 million individuals worldwide. If all of the people with a rare disease lived in one country, it would be the world’s 3rd most populous country.
- Approximately 50% of the people affected by rare diseases are children, and 35% of children with a rare disease will not live to see their 5th birthday.
- 95% of rare diseases do not have a single FDA-approved treatment or therapy.
- In 2016, Congress passed the 21st Century Cures Act, which included several provisions supported by CLSA to accelerate new therapies for rare diseases and ease the burden on families.
- To learn more about World Rare Disease Day, click here and for more information about rare diseases, check out NORD, EveryLife Foundation for Rare Diseases and Global Genes.