In the U.S., over 30 million people live with rare diseases, and 300 million are affected globally. 


  • Over 7,000 rare diseases are known, but less than 400 of them have approved treatments.
  • 1:10 people suffer from a rare disease in the United States.
  • 50% of those affected are children.
  • 30% of rare disease patients will not live to see their 5th birthday.
  • Rare diseases are responsible for 35% of deaths in the first year of life.
  • Costs to sequencing the genome decreased from $95,263,072 in 2001 to $4,905 in 2014.

Our biggest challenge: little funding is designated to research on rare or undiagnosed diseases.

Donate today to help Rare Genomics:

  • Connect patients to next generation sequencing services.
  • Help families with financial hardship raise money to pay for sequencing.
  • Analyze sequencing results.
  • Coordinate follow up functional research studies with collaborating scientists.
  • Help rare disease families connect.


Some highlights of our accomplishments in this past year include:

  • Managed 40 patient exome and whole genome sequencing projects.
  • Achieved 9 funded projects worth an estimated $933,000 for patients in need.

By donating, you'll be joining our community of researchers, doctors, business leaders, and families to bring back hope to patients with rare diseases. 

Thank you!

The Rare Genomics Institute Team (RG)


Rare Genomics Institute is a 501(c)(3) charitable non-profit organization.  Donations to our organization are tax deductible and made with the understanding that Rare Genomics Institute has ultimate discretion and control over the use of donated funds.  All donations, even those made to specific crowdfunding campaigns, are intended for Rare Genomics Institute, not any specific individual or cause.  Donations to specific crowdfunding campaigns are considered spending recommendations, and while Rare Genomics Institute will make good faith efforts to effectuate each donor’s preference to support an individual or cause, per IRS rules on tax deductibility, Rare Genomics Institute has complete discretion and control over the use of all such donations.


Meet some of the fundraisers that are part of this campaign

Recent Updates

Recent Donors


Share with Friends