Updated Rare Disease Facts and Figures from NORD

January 5, 2017 8:20 am Tags: , No Comments 5

Updated Rare Disease Facts and Figures from the National Organization for Rare Disorders (NORD)

Below are the updated facts NORD will be using in 2017. The following facts have vetted data to back up the statements.

2016: Rare disease affects more people than AIDS and Cancer combined 
2017: There are more Americans who live with a rare disease than ALL of those who have either HIV, Heart Disease or Stroke.
 
2016: 95% of rare disease does not have a single FDA approved drug treatment and there are no cures
2017: 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.
 
2016: Approximately 50% of rare disease does not have a disease specific foundation supporting or  researching their rare disease
2017: Families & private foundations provide about 3% of ALL medical research funding in the U.S.

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.