• This Is Who These Rare Kiddos Are

  • Jul 25 2024
  • Length: 34 mins
  • Podcast

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This Is Who These Rare Kiddos Are

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  • Summary

  • 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.

    Mentioned in this episode:

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