RARECast: Living with a Disease in Search of a Name

For many families with a child who has a rare disease, realizing that something is wrong can be the beginning of an often long and difficult diagnostic odyssey. Typically, it can take years to get a diagnosis and during that time, people can find themselves isolated and without resources or support as they seek to put a name to symptoms. We spoke Amy Clugston, president of SWAN (Syndromes Without a Name) USA, about life without a diagnosis, the work of SWAN USA, and the upcoming Undiagnosed Children’s Awareness Day on April 29.

RARECast is a weekly series by Daniel S. Levine. Levine is an award-winning business journalist who has reported on the life sciences, economic development, and business policy issues throughout his 25-year career. He founded Levine Media Group in 2013, which produces The Bio Report and RARECast podcasts. Read his full bio here.