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Sep. 8, 2015

TOPIC: Events, Patients & Members

Rare Disease Artists’ Work Traveling Globe to Raise Awareness

Posted by Jennifer Huron

cystinosisThe Cystinosis Research Network (CRN), a 501(c)(3) charitable organization and NORD member, created the first-ever “Dream, Achieve, Inspire” art exhibit prepared entirely by patients with cystinosis, a rare, genetic-metabolic disease. Paintings, poems, sculptures, dance, and photography from 107 individuals with cystinosis covering 30 countries came together under Exhibit Chairperson, Katie Larimore.

The art exhibit opened in Chicago at the July 2015 CRN Family Conference. The result was a record-breaking 340 attendees, the largest turn out in conference history. The Chicago debut of the “Dream, Achieve, Inspire” collection kicked off a world tour for the art pieces. Mrs. Larimore has booked the exhibit for cystinosis gatherings in Mexico, Brazil, and Europe with more destinations being added. The goal is to showcase the talent of the cystinosis community and raise awareness about cystinosis.

For information on how to view the artwork, donate, volunteer, or become part of the Cystinosis Research Network, visit

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