On Wednesday, July 29, the NF Network was honored to host the opening night of Rare Square: A Rare Community Art Exhibition at Positive Exposure Gallery in New York City. While the exhibition brought together artists and stories from across the rare disease community, for the NF Network, the evening was a powerful celebration of the creativity, resilience, and individuality of people living with neurofibromatosis (NF).

At the heart of the exhibit was a simple but meaningful question posed to artists, medical students, patients, and members of the rare disease community: What does rare disease mean to you?

For the NF community, the answer was expressed through art created by children living with NF through the annual SketchNF program. Their artwork offered a glimpse into their experiences while reminding everyone who viewed it that behind every NF diagnosis is a child with their own imagination, personality, hopes, and dreams.

SketchNF is dedicated to empowering children in the pediatric NF community to share their voices and stories through art. The artwork is auctioned each year to raise funds for NF research and support while helping build a community where children affected by NF can connect and know they are not alone.

The program was founded by brothers Shilp and Sahil Shah after Sahil, who has NF1, began experiencing significant complications from the condition as a child. Shilp watched his brother navigate migraines, neck pain, tumors, and surgery and recognized how difficult it was to find an accessible pediatric NF community. That experience inspired the brothers to create SketchNF—building connection and community one sketch at a time.

Another important presence at Rare Square was artist Rachel Mindrup, whose work has been deeply intertwined with the NF community for more than a decade.

Mindrup is an associate professor of drawing and painting and the Richard L. Deming, MD Endowed Chair in Medical Humanities at Creighton University. Her own son, Henry, was diagnosed with NF, inspiring her ongoing portrait series, Many Faces of Neurofibromatosis.

Mindrup also played an important role in bringing the artwork from Creighton University’s medical and art students to Rare Square. Her involvement created a meaningful bridge between art, medical education, and the lived experience of NF.

Her own work has long challenged viewers to look beyond the diagnosis. In her Many Faces of NF series, Mindrup paints people with NF doing the things they love—reading, playing music, spending time with family, pursuing hobbies, and simply living their lives. Her goal is to make NF secondary to the humanity of the person.

That perspective was also reflected in a special body of Mindrup's work featuring people with NF that was on display during the exhibition. Her portraits provided a powerful complement to the children's artwork from SketchNF: together, they showed the many faces and many experiences of NF.

Mindrup's NF work has been exhibited extensively, including at Positive Exposure Gallery in New York City, and her exhibitions have featured portraits of people living with NF from across the country. She is currently working toward painting someone with NF from all 50 states, with the goal of bringing the collection to Washington, D.C., as part of NF advocacy efforts for federal research funding.

For those living with NF and those who support them, the opening night offered something that can be difficult to find: a room filled with people who understood that rare conditions like NF are more than a medical diagnosis.

For many, the evening touched beyond those in the neurofibromatosis community; Rare Square artist Suzannah Bird captured that feeling beautifully:

“It was a powerful evening. I felt so blessed to be in the room with so many creative people from the rare disease community. I recognized my own journey in the work of others. It was deeply moving. I can’t thank you enough for pulling this together. I felt so at home in a space filled with love and joy.”

Her words speak to what made the evening so meaningful. The artwork did more than educate visitors about NF and other rare genetic conditions. It created opportunities for people to recognize themselves—and one another—in the stories on the walls.

And that is ultimately the power of art: it can make an invisible experience visible, create understanding where there was once uncertainty, and remind us that every diagnosis represents a person with a story worth seeing.

For the NF Network, Rare Square was an opportunity to bring those stories into the heart of New York City and to celebrate the young artists, families, advocates, educators, and artists who continue to change the way the world sees neurofibromatosis.

One sketch. One portrait. One story at a time.

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