This is Who These Rare Kiddos Are

Beyond the Diagnosis is more than a traveling art exhibit.  It is a movement to humanize the children who happen to have a rare disease.  So much of the work around rare diseases is logical, scientific, and medical.  It can be a world without feeling.

Using art and artists to introduce and celebrate these children is much more personal and evocative.  Raghav’s mom Ramya describes it as “creating joy and a feeling of permanence in the fleeting lives we have.”  The artists who paint these pictures find a new purpose, a sense of amazement, and a deep understanding of these children. 

Listen to rare mom Patricia Weltin describe the origins and the unexpected organic growth of this movement. 

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