We are a coalition of stakeholders changing the way rare diseases are addressed in Utah.
Rare Disease Day takes place on the last day of February each year with Utah holding it as a two-day event.
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 who have a genuine interest in rare diseases are invited to advocate for our children and loved ones living with a rare and undiagnosed disease.
The inspiration our loved ones give us each day has led to the advancement of national plans and policies for rare diseases in countries throughout the world. Our children have been phenomenal leaders and continue to motivate our fight for a diagnosis no matter the obstacles we face during our journey together. We are merely their advocates and are honored to call them our leaders