Home health remedies Novartis’ rare disease effort draws on comic book characters with PIK3CA mutations—and...

Novartis’ rare disease effort draws on comic book characters with PIK3CA mutations—and superpowers

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Comic books and kids go hand in hand, so Novartis created a custom book to reach kids with rare diseases caused by PIK3CA gene mutations.

Specifically meant for ages 8-12, the “Meet the PROS” comic book centers on five superhero characters who are also children living with different manifestations of the disease.

Led by Professor P, the children use their superpowers to help young readers learn about PIK3CA-related overgrowth spectrum (PROS) disorders—and find their own heroes inside themselves.

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While it can be difficult for adults and caregivers to educate themselves and others, it’s especially tough for kids who get asked questions and struggle with not only explaining the disease to their peers but also with understanding it themselves, Shannon Campbell, senior vice president and franchise head of Novartis Oncology, said in an email interview.

The condition includes at least 13 different rare diseases caused by the same PIK3CA mutations. The rare diseases are diverse but are “typically characterized by atypical, visible growths along with anomalies in the blood vessels and lymphatic system,” Novartis said.

While the campaign is unbranded, Novartis is currently recruiting pediatric and adult PROS patients for a phase 2 trial of its experimental med alpelisib, which is approved as Piqray to treat metastatic breast cancer.

Along with the print and digital comic books, the Meet the PROS website includes conversation guides, fact sheets and resources. Novartis tapped into the PROS community of adults, children and caregivers to make sure the materials it created were “authentic and genuinely helpful,” Campbell said.

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“People living with PROS face many psychosocial impacts including feelings of frustration and isolation, which begin at the path to diagnosis; for many this is a long journey,” Campbell noted. “Children may also experience stress and anxiety from missing their favorite activities or from not having resources that help them make sense of their disease and tools to explain it to others.”

One of the parents who worked with Novartis was frustrated in her own search for PROS information after diagnosis.

“I’m hopeful that these resources will help parents and families learn more, feel less alone and raise awareness about the physical and emotional impacts of these rare conditions,” the parent, Lauren, said in a news release.

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