Living with a Disease in Search of a Name

For many families with a child with a rare disease, realizing that something is wrong can be the beginning of an often long 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 what is wrong with their child. We spoke Amy Clugston, president of SWAN USA, about life without a diagnosis, the work of SWAN USA, and the upcoming Undiagnosed Children’s Awareness Day on April 29.