Rare diseases

Have a frequency of 1 in  2000.

More than 10,000 rare diseases.

A rare disease affects more than 200,000 people living in the US.

Affects about 6% of the population in Western societies.

Rare cancers are associated with incidence of less than five or six per hundred thousand person-years. making almost all pediatric cancers rare.

Approximately 30 million people are affected by a rare disease.

More than half of the 30 million people affected by a rare disease or children.

More than 80% of rare diseases have a genetic component.

Most rare diseases are serious and can involve chronic illness, disability and death.

1/3 of children with a rare disease die before their fifth birthday.

Next generation sequencing has improved rates of diagnosis.

Treatments exist for fewer than 5% of individuals with rare conditions.

One in 10 Americans is affected by a rare disease.