Rare Disease Week

February 24, 2022

BioUtah is pleased to recognize Rare Disease Day, designated as February 28. There are approximately 7,000 rare diseases, affecting an estimated 25 million to 30 million Americans. Only five percent of these diseases have a treatment.

The mantra of the National Organization for Rare Disorders (NORD) – “Alone we are rare. Together we are strong” – reflects the impetus behind a law passed in 2019 by the Utah legislature to establish a Utah Rare Disease Advisory Council (RDAC). The Utah RDAC held its first meeting last year, in October, and has been meeting on a bi-monthly basis to address the needs of the state’s rare disease community.

Under the umbrella of Utah’s Department of Health, the aim of the advisory council is to bring stakeholders together – policymakers, patients, caregivers, physicians, nurses, insurers, researchers and industry – to make a difference for patients with rare disease.

“It’s important that we join together to give voice to those struggling with rare disease,” said Kelvyn Cullimore, president and CEO of BioUtah. “In many ways, our life sciences sector is a critical partner, working to develop the diagnostics and therapies that will help improve the lives of these patients.”