For most children, the lack of a diagnosis precludes participation in support charities, but the numbers of rare or undiagnosed are staggeringly common, and their medical and emotional needs are great.
Individually, these diseases are uncommon but when we add up the numbers, 25-30 million Americans and another 30 million people in the European Union are afflicted.
It is estimated that 350 million people worldwide suffer from a rare disease. Rare disease affects more people than AIDS and cancer combined.
The National Institute of Health (NIH) estimates that 25 – 30 million Americans have rare diseases. A rare disease is one that affects less than 200,000 people.
It takes an average of 7.6 years, 8 physicians, and 2-3 misdiagnoses to correctly identify a rare disease. Up to 80% of the 6,800 rare diseases are genetic in origin.