There are over 7,000 known rare disorders or diseases, a statistic which is continually growing as medical science advances. The European Union's definition of a rare disorder or disease is a condition which affects 5 or less people in every 10,000.
Scleroderma is a rare, autoimmune, connective tissue disease characterized by the overproduction of collagen, which results in the thickening and hardening of the underlying connective tissues which support the skin, blood vessels, muscles, and internal organs such as the heart, lungs, and kidneys.
It affects approximately 2 people in every 10,000.
What are the odds of having a rare disease though? Here are some noteworthy statistics:
- 10 percent of Americans suffer from a rare disease (approximately 30 million people)
- Europe also has approximately 30 million with a rare disease
- More than 350 million people worldwide have a rare disease
- If all of the people with a rare disease lived in one country, it would be the world's third-most populous country
- 80 percent of rare diseases are genetic in origin
- 75 percent of rare diseases affect children
- 30 percent of children with rare disease will not live to see their fifth birthday
- Rare diseases are responsible for 35 percent of deaths in the first year of life
- There are more than 7,000 different types of rare disease
- 80 percent of all rare-disease patients are affected by just 350 rare diseases
- 95 percent of rare diseases have no FDA approved drug treatments, according to data published by the Kakkis EveryLife Foundation
- More than 95 percent of rare diseases have no therapy or drug
- 50 percent of rare diseases do not have a disease-specific support foundation