Alnylam debuts video series to help kids understand rare disease PH1

The campaign, developed in conjunction with the Oxalosis & Hyperoxaluria Foundation, is based on insights Alnylam gained from parents and the advocacy group, said Seth Levine, director and head of corporate brand and creative at Alnylam.

Rare diseases can be difficult for kids to understand. Yet when kids are the ones affected, they not only need to know about them, but also could use help explaining them to others.

That’s why Alnylam Pharmaceuticals created the "PH1 of a Kind" campaign. The animated video series with four fictional kid characters is an attention-getting educational tool to support kids with primary hyperoxaluria type 1 (PH1), a rare genetic liver disease that severely impacts the kidneys and is most often diagnosed in children. Fifty percent are diagnosed by age 10 and another 20% by age 19, with 3,000 to 5,000 currently diagnosed cases in the U.S.

Two key facts? Kids with rare diseases feel misunderstood and isolated and have trouble explaining their conditions, and parents feel the same way. They don’t have the tools they need to explain what’s going on to their young children or their extended network of family, friends and community.

"In this disease in particular, although there is a lot of information about PH1, there wasn’t any content that was child-focused or child-friendly," he said.

The videos and behind-the-scenes footage are available on the campaign website and on Alnylam’s YouTube channel. The drugmaker will use social media to drive views.

"We hope that kids will feel less isolated because they’ll realize they’re not alone and there are other kids out there all over the world who are also experiencing what they’re experiencing. We also hope they’ll feel more confident explaining PH1 to other children and adults," Levine said.

While the campaign is unbranded, Alnylam is in late-stage studies of lumasiran, an RNAi therapeutic targeting glycolate oxidase for the treatment of adults and children with PH1. It’s expecting to report top-line results before the end of the year. According to a recent news release, if the results are positive, Alnylam will submit filings for global regulatory approvals starting in early 2020.

Each video in the unfolding series will focus on a different child. The first one out shows Isabelle, a young girl talking to her class about her experiences, including having to drink lots of water and sometimes getting painful kidney stones. Her teacher helps guide the conversation, while other students ask curious kid questions such as, "What’s it like?"

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