Rare Disease Day

CODR Participates in Rare Disease Day

Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases

Read more on rarediseaseday.org

Providing Hope for Rare Diseases

Since its inception in 2005, the Center for Orphan Drug Research (CODR) has been improving the care of individuals suffering from rare diseases through research, increased education efforts, and by taking an active role in shaping public policy applicable to rare diseases and orphan drug development. The focus of CODR research is rare pediatric neurological disorders.

While some bear names you’ve likely never heard of, other examples may surprise you. Huntington’s disease, Tourette’s syndrome and muscular dystrophy are all classified as rare diseases. In all, more than 7,000 medical disorders are considered rare.

For decades, Americans diagnosed with rare diseases had little hope. Drugs used to treat such conditions – known as “orphan drugs” – often never made it out of the lab as prioritization was put on drugs that would help conditions affecting millions. Then, in 1983, Congress passed the Orphan Drug Act in order to stimulate the development of new treatments for rare diseases. The move worked; since 1983 more than 350 new drugs have been developed.

Today, the University of Minnesota Center for Orphan Drug Research is investing new resources into the development of orphan drugs and drug delivery systems that could impact the lives of millions of people both in Minnesota and across the United States.