Hemophilia News Today columnist wins 2026 RARE Artist award
Horowitz turns used infusion equipment into IV Couture
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G Shellye Horowitz, an artist and advocate who writes the column The Forgotten Factor for Hemophilia News Today, has been selected as a winner of the RARE Foundation‘s 2026 RARE Artist program.
“I’m thrilled to use art to advocate for hemophilia and superior mesenteric artery syndrome,” Horowitz told Hemophilia News Today. “Rare diseases are often unrecognized, misunderstood, and underdiagnosed. That creates a burden beyond the disease itself for patients and their families. Awareness opens the door to diagnosis, compassion, support, and a drive to improve life for people with rare diseases.”
The artist said she’s grateful for the Bionews community’s support. (Bionews is the parent company of Hemophilia News Today.) “Thank you for spreading the word, voting, and advocating for all of us living with rare diseases,” she said.
Horowitz lives with hemophilia A, and she has been a longtime advocate for people with the condition, sharing her own experiences and highlighting her journey as a woman with hemophilia. Like many people with the condition, she regularly receives hemophilia treatments given by infusion to help manage her symptoms.
More than a year in the making
Usually, supplies for these infusions — needles, caps, IV lines, and so on — are put into biohazard waste bins and discarded after use. But last year, inspiration struck, and Horowitz started saving used equipment to put together an art project.
G Shellye Horowitz turns used medical equipment into art. (Photo courtesy of G Shellye Horowitz)
Soon after she started her piece, however, Horowitz had a major health scare. She lost weight rapidly for unexplained reasons. After her fourth trip to an emergency room in less than two months, she was diagnosed with another rare disease, superior mesenteric artery syndrome (SMAS), which required surgery to control.
More than a year later, Horowitz was able to complete her art piece, IV Couture. The piece features a bikini-style top and a long skirt, all fashioned out of discarded pieces of infusion equipment.
“IV Couture is my way of expressing gratitude for the treatments that saved my life, while refusing to hide the reality of what survival requires,” Horowitz said in her artist statement. “Rare disease advocacy, to me, means showing the full picture—the burden and the beauty—so the invisible parts of this life become impossible to look away from.”
Horowitz was one of 10 RARE Artist program winners this year. Alongside IV Couture, winners include other forms of visual and material art, as well as a poem, a song, and, for the first time, a short film. The RARE Foundation runs this program to celebrate individuals who use art as a platform for rare disease advocacy.
“RARE Artists are truly redefining rare!” Stephanie Riordan, senior director of patient programs at the RARE Foundation, said in a press release announcing the winners. “Through painting, poetry, music, film, and so many other creative mediums, these talented advocates are sharing their experiences, challenging perceptions of rare diseases, and showing the world that they are so much more than their diagnoses.
Horowitz and the other winners will show their creations in Washington next March during Rare Disease Week, an effort to engage with lawmakers about priorities for the rare disease community.
“Art also takes storytelling a step further by bringing these experiences to life in a tangible, visual way that can leave a lasting impression when meeting with our lawmakers,” Riordan said. “It’s exciting to see each year how RARE Artists continue to redefine what advocacy can look like and encourage others to share their stories!”
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