Alnylam Makes Rare Disease Education Accessible to Kids with Animated Videos
Alnylam Pharmaceuticals has blended a children’s cartoon with a disease awareness campaign in its latest education effort for pediatric rare disease PH1.
Kids with PH1, or primary hyperoxaluria type 1, often need special accommodations at school. Because PH1 affects the kidneys and liver and causes recurring kidney stones, children with this rare disease need to drink a lot of water and must leave class often to go to the bathroom or get water.
For other kids, seeing a classmate leave the room to get water or use the bathroom can be misunderstood as a special privilege when it’s how kids with PH1 manage their condition.
“Kids with a rare disease can feel isolated and misunderstood and struggle to talk about their disease, and their caregivers can feel the same way,” said Seth Levine, head of corporate brand and creative at Alnylam. “There was a need for resources for patients and caregivers to help others understand their disease. In conversations with parents and advocates, we learned there is a lot of information out there, but nothing that was child-focused and child-friendly.”
The campaign, PH1 of a Kind, is a four-part video series explaining aspects of the disease. The first video delves into the physiological experience of PH1, explaining the experience of one student, Isabelle, with the disease.
Because the video is intended for kids, the team needed to ensure they could understand it. Isabelle and her teacher talk about PH1 in simple terms. Isabelle explains her condition in kid terms, like saying her kidneys are filled with “stuff” that causes stones and that PH1 can give her a “really bad bellyache.”
The teacher chimes in to explain in more technical terms, like that kidney stones are caused by oxalate and that dialysis is needed if the kidneys don’t work properly.
“It’s adults who are developing this content, so we want to make sure that we explain things at an age-appropriate level and pace the information in such a way that we can explain what we want to explain in a two-minute format,” Levine said. “We were balancing the need to explain things that are complex and hard and to do so in a way that’s simple.”
Alnylam has partnered with the Oxalosis and Hyperoxaluria Foundation, the primary patient advocacy group for PH1, to make sure the content was correct and accessible to kids. The OHF also connected Alnylam with patients and caregivers to test early video content and storylines. The pharma company also worked with W2O and production firm Hero4Hire Creative to develop the campaign.
More videos will be released in coming months and represent the experience of kids with PH1 around the world. Levine said the videos will focus on the emotional aspect of having a rare disease and how these kids manage their condition.
Levine said his team also considered an illustrated children’s book about PH1, but video won out because “video is already an important part of most kids’ lives.”
Alnylam is developing a treatment for PH1 for children and adults that is in late-stage clinical trials.
“We wanted to develop this as a resource for the patient community, to create something that those kids and parents could share with their extended caregiver community, like teachers, coaches and administrators,” Levine said. “From initial feedback, parents finally feel like they have something they can send to teachers and extended family that explain what’s happening with their children.”