Utah Rare is a coalition of rare disease stakeholders formed to organize Utah’s recognition of Rare Disease Day.

Throughout the world, Rare Disease Day events take place on the last day of February.

Join Utah Rare for a two-day event as we raise awareness and celebrate the ongoing inspiration and motivation all loved ones with a rare disease continue to provide us each day. Join us!

Our goal is to raise awareness amongst the general public and decision-makers regarding rare diseases and the life-long impact they have on patients’ lives.


View Rare Disease Day 2016 Program

We call upon Utah’s key influencers to join together and do something remarkable – save lives. Policy makers, public authorities, industry representatives, researchers, health professionals and all those in our community with a genuine interest in making a real difference in the rare disease world, are invited to advocate for our children and loved ones living with a rare or undiagnosed disease.

Letter to YOU

rare disease day community letter





Our Hope for 2016

Joining together in this life-long journey to change the way we diagnose and treat rare diseases is the most fulfilling accomplishment we can do as a unified community.

In order to achieve our bold, but critical mission, we must find a way to put the patients in the driver seat. The stories shared can bring other professionals and groups together to make our dreams for a diagnosis become reality.

Money to Raise$1,000,000

New Studies to Start50

Patients to Find a Diagnosis10,000

Patients to get Sequenced100,000