1) There are approximately 7,000 different types of rare diseases and disorders, with more being discovered each day
2) 30 million people in the United States are living with rare diseases. This equates to 1 in 10 Americans or 10% of the U.S. population
3) If all of the people with rare diseases lived in one country, it would be the world’s 3rd most populous country
4) In the United States, a condition is considered “rare” it affects fewer than 200,000 persons combined in a particular rare disease group. International definitions on rare diseases vary. For example in the UK, a disease is considered rare if it affects fewer than 50,000 citizens per disease
5) 80% of rare diseases are genetic in origin, and thus are present throughout a person’s life, even if symptoms do not immediately appear
6) Approximately 50% of the people affected by rare diseases are children
7) 30% of children with rare disease will not live to see their 5th birthday
8) Rare diseases are responsible for 35% of deaths in the first year of life
9) The prevalence distribution of rare diseases is skewed – 80% of all rare disease patients are affected by approximately 350 rare diseases
10) According to the Kakkis Every Life Foundation 95% of rare diseases have not one single FDA approved drug treatment
11) Approximately 50% of rare diseases do not have a disease specific foundation supporting or researching their rare disease
12) The zebra, with its distinctive stripes, is the official symbol of rare diseases in the United States.
To learn more or get involved in raising awareness for rare disease you can go to Global Genes website at https://globalgenes.org/rare-diseases-facts-statistics/
or National Organizations for Rare Disorders website at https://rarediseases.org/