Senator Richard Burr: Hope for Americans with Rare Diseases

By definition, a rare disease affects a small number of people, but the community as a whole is immense. More than one million North Carolinians have a rare disease. Nearly every family and community in the state feels the impact of these illnesses in some way.

This week, I spoke before the Health, Education, Labor and Pensions (HELP) Committee about the need for rare disease treatments.

WATCH: Sen. Burr speaks on treatments for rare diseases

I highlighted the example of Taylor King from Charlotte, NC who suffers from Batten disease, a rare genetic condition for which no treatments are currently available. Taylor’s mother, Sharon King, started Taylor’s Tale, an advocacy group dedicated to combatting Batten disease and advocating for the rare disease community.

Taylor’s fight is our fight. And the fight isn’t over. Innovation is at the heart of how we are going to help Taylor win her battle and combat so many diseases and disorders that impact families in North Carolina and across this country.  But it’s up to us to step up to this challenge, and I hope we do so on behalf of Taylor and all of the other Americans like her who are counting on innovation to discover the cure that will help them win their battle.