The Children's Tumor Foundation
07/17/2026 | Press release | Distributed by Public on 07/17/2026 08:18
Rare Square by SketchNF Brings Rare Disease Stories to Life Through Art
Awareness, Featured, Featured EU
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This summer, rare disease stories will take center stage in New York City through Rare Square by SketchNF, a month-long community art exhibition presented by SketchNF in partnership with Positive Exposure, Creighton University School of Medicine's Department of Art as Applied to Medicine, NF Network, and NORD.
Poster for a rare disease community art exhibition featuring a zebra illustration and event details for July 7-August 14 in New York City.The exhibition, Rare Square: A Rare Community Art Exhibition, is open July 7 through August 14, 2026, at Positive Exposure, located at 83 Maiden Lane, 4th Floor, New York, NY 10038. A special celebration will take place on July 29.
Featuring more than 35 works of art representing over 15 rare diseases, the exhibition invites patients, caregivers, students, and physicians to respond to one powerful question: What does rare disease mean to you?
A collage of children's colorful drawings, including rainbows, animals, landscapes, and cartoon characters, arranged in a grid pattern on a wall.Among the works on display is a special mosaic of artwork created by children in the NF community, bringing together individual drawings into a collective expression of creativity, courage, and connection.
For brothers Shilp and Sahil Shah, who founded SketchNF, the project is deeply personal.
Sahil was diagnosed with neurofibromatosis type 1, or NF1, at age 1. For years, he was largely symptom-free. Then, beginning around age 9, he began experiencing symptoms including severe migraines, neck pain, and tumors that ultimately required surgery. As Shilp watched his brother navigate the challenges of NF1, he wanted to support him-but also recognized that Sahil needed connection with other children who could truly understand what he was going through.
When the brothers looked for an accessible pediatric NF community, they found few options. That search became the beginning of SketchNF.
Today, SketchNF uses art to help children with NF share their stories, raise awareness, and build community "one sketch at a time." Through original drawings and community engagement, SketchNF creates opportunities for young people affected by NF to express what words alone may not fully capture.
"Just like many others in the NF community, my NF journey has been hard to explain with just words," Sahil shared. "SketchNF was born out of that difficulty, and this exhibit features some incredible pieces from individuals in the NF community who were able to give that experience a voice through their artwork."
For the Children's Tumor Foundation, Rare Square is a meaningful example of how community-led efforts can help broaden understanding of NF and rare disease. Art can make visible what is often difficult to explain: the physical, emotional, and social experiences of living with a rare condition, and the resilience of the individuals and families who face those challenges every day.
The exhibition also includes artwork connected to the SketchNF auction, which will be open for bidding from July 22-29, with pre-registration available now. Community members can place their bids at sketchnf2026.givesmart.com.
CTF is proud to spotlight Rare Square by SketchNF and celebrate the young artists, families, and rare disease advocates using creativity to raise awareness, build connection, and help more people understand the lived experience of NF
The Children's Tumor Foundation published this content on July 17, 2026, and is solely responsible for the information contained herein. Distributed via Public Technologies (PUBT), unedited and unaltered, on July 17, 2026 at 14:19 UTC. If you believe the information included in the content is inaccurate or outdated and requires editing or removal, please contact us at [email protected]