SALT LAKE CITY – One in ten Utahns has or will be diagnosed with a rare disease.
The inaugural Utah Rare Disease Day Symposium hope to raise awareness for those who have a rare disease. The symposium was sponsored in part by the National Organization for Rare Disorders and held at the University of Utah.
The event was a TED Talk-style format meant to inspire and motivate partnerships between patients, doctors, researchers and other stakeholders.
“I think it’s a really exciting time for rare disease because frequently I think a lot of people think, ‘Oh that’s kind of sad and hopeless, there’s nothing you can do.’ But that’s completely false and it’s very much changed,” said Christina Might, chairperson for the event.
Might says it takes seven years on average to get a diagnosis of some of the rare diseases, and that’s why it’s important for research and technology to keep progressing.