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Alnylam Launches PH1 of a Kind - An Animated Video Series for Kids with PH1
June 21, 2019
Alnylam Pharmaceuticals
Yesterday, at the OHF International Hyperoxaluria Workshop in Boston, Alnylam previewed PH1 of a KindTM, a new animated video series for children about living with primary hyperoxaluria type 1 (PH1). The four-part video series stars Isabelle, Luuk, Asha, and Will — kids from around the world who have been diagnosed with PH1 as they experience a range of situations and cope with emotions as a result of their condition.
PH1 of a Kind is being developed in partnership with the Oxalosis & Hyperoxaluria Foundation (OHF), and is geared toward children of elementary school age. The series is also meant to be a resource for their families, friends and communities.
A family at the OHF Meeting.The title and theme of the series – “PH1 of a Kind”, is intended to help children with PH1 – an ultra-rate genetic disease, feel that while they have PH1, it doesn’t define them – that they’re special because of who they are. To learn more about PH1, click here.
PH1 of a Kind fills a significant gap in the patient-focused educational content currently available to the PH1 community – content about and for children. Approximately 50% of PH1 patients are diagnosed in early childhood (under the age of 10), with roughly 20 percent diagnosed in adolescent years (age 10-19).* Based on this insight, and numerous conversations with the OHF and parents in the PH1 community, Alnylam and the OHF decided to help.
The emotions children experience when diagnosed with PH1 can be overwhelming. Many parents are left searching for ways to explain what’s going on to not only their small children, but also the people who will make up their support system – namely siblings, teachers, extended family and the broader community. I’m so excited to see PH1 of a Kind come to life as it will be an incredibly valuable resource that this community so very much needs and deserves – Kim Hollander, Executive Director of the OHF
At the OHF International Hyperoxaluria Workshop, more than 275 attendees including healthcare professionals and researchers and more than 30 PH1 families were introduced to PH1 of a Kind for the first time and were able to pose with life size cutouts of the characters, wear stickers with the campaign logo and take home water bottles to help with hydration. Hyperhydration is part of the disease management regimen for many people living with PH1 as it can help prevent recurrent kidney stones - one of the hallmarks of the disease.
Developing the characters who star in PH1 of a Kind.Animated in a bright, fun and dynamic style that will be familiar to children and caregivers, PH1 of a Kind will tell the stories of four children experiencing four different aspects of life with PH1. The first video will debut in early September, just in time for back-to-school.
In the meantime, you can see exciting behind-the-scenes content about the making of the video series and sign up for updates to be notified when the videos are released at PH1ofaKind.com.
*Lieske JC. et al., International Registry for Primary Hyperoxaluria, Am J Nephrol 2005;25:290–296.
