Below are the updated facts NORD will be using in 2017. The following facts have vetted data to back up the statements.
Rare Disease Facts and Figures:
There are over 7,000 distinct types of rare diseases
In the United States, a disease is defined as rare when it affects less than 200,000 at any given time
Rare diseases affect 1 in 10 people, more than 350 million people worldwide
Approximately 50% of the people affected by Rare Disease are children
30% of children with rare disease will not live to see their 5th birthday
There are more Americans who live with a rare disease than ALL of those who have either HIV, Heart Disease or Stroke.
95% of rare diseases are without an FDA approved treatment or therapy.
Those 5% with FDA treatment still struggle with accessing it due to high costs and variability.
Families & private foundations provide about 3% of ALL medical research funding in the U.S.