The Rare Disease United Foundation launched the Beyond the Diagnosis exhibit just two years ago. The idea was that portraits of those living with rare diseases could allow people to become more engaged with the rare disease patient community; that there is more to a person living with a rare disease than the diagnosis itself.
There are 7,000 rare diseases affecting 30 million Americans. At last count, Beyond the Diagnosis has portraits of over 60 individuals affected by rare diseases. The goal is to cover all 7,000.