What are Rare Diseases?

A Disease is rare when it affects fewer  than 200,000 Americans at any given time or fewer than 1:2,000 people in Europe.

Rare Disease Facts

  • 1:10 people suffer from a rare disease (U.S.)
  • 30% will not live to see their 5th birthday
  • Rare diseases are responsible for 35% of deaths in the first year of life
  • 50% affected are children
  • Affect over 300 million people worldwide
  • 80% affected by approximately 350 of the roughly 7,000 rare diseases, the other 20% are afflicted by the rest of the documented rare diseases
  • Costs to sequencing the genome decreased from $95,263,072 in 2001 to $4,905 in 2014

What role does Rare Genomics Institute play?

RG Helps design personalized research projects, provides expert analysis and recommendations, and connects patients to case-specific researchers for precision medicine development.


RareShare is an online social hub that hosts over 7,000 rare disease communities and empowers patients through sharing of experiences, best practices and providing access to resources and Physicians.

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