What is a “Rare Disease”?
In the United States, a rare disease affects 200,000 or fewer persons
Globally, 350 Million people suffer from a rare disease. This is greater than the entire population of the U.S.
Number of Rare Diseases: 7000+
Examples include: Amyotrophic Lateral Sclerosis (ALS), Duchenne Muscular Dystrophy, Cystic Fibrosis, All Childhood Cancers
- 1 in 17 people will suffer from a rare disease at some point in your life
- 1 in 2 Rare Diseases Don’t Have a Foundation or Research Support Group
- 1 of 2 Patients Diagnosed with a Rare Disease is a Child
- 3 of 10 Children with a Rare Disease Won’t Live to See Their 5th Birthday
- 8 in 10 Rare Diseases are Caused by a Faulty Gene
- The Average Time it Takes for Rare Patients to Receive an Accurate Diagnosis (on average 8-10 different physicians consulted)
95% of Rare Diseases Lack an FDA Approved Treatment
RARE Diseases Impact More People Than Cancer and AIDS Combined
Children make up over 50% of those affected
Financial Impact on Patients:
- 37% borrow money , 53% access personal savings, 34% seek support from charities, 50% (approximately) of rare diseases do not have a foundation supporting them