Alnylam Pharmaceuticals has developed and produced a cartoon series aimed at educating people — especially young people — about the pediatric rare disease primary hyperoxaluria type 1 (PH1).
The campaign — called ‘PH1 of a Kind’ — is a four-part video series explaining aspects of the disease. The first video (which you can find below) delves into the physiological experience of PH1.
Alnylam is also developing a treatment for PH1 for children and adults that is in late-stage clinical trials.
What a great resource!
What is PH1?
Primary hyperoxaluria type 1 is a rare disorder that affects the kidneys. PH1 results from buildup of oxalate, which normally is filtered through the kidneys and excreted in the urine. For those with PH1, the oxalate accumulates in the kidneys and urinary tract and combines with calcium to form the main component of kidney and bladder stones.
Some symptoms include:
- Kidney and bladder stones (and symptoms associated with kidney/bladder stones)
- Stunted growth
- Kidney damage
- Renal failure
Kids with PH1 often need special accommodations at school, like needing to drink more water and having to go to the bathroom more often. Some kids might misunderstand seeing a classmate leave the room to get water or use the bathroom as a special privilege — when it’s just 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.”
So the below clip introduces Isabelle — a young girl managing her PH1 in a classroom setting.
Because the video is intended for kids, the team needed to ensure that kids could relate to it. Isabelle and her teacher talk about PH1 in simple terms, explaining 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.”
Take a look!
Thanks Isabelle for that lesson!
More videos will be released in coming months and represent the experience of kids with PH1 around the world. They will focus on the emotional aspect of having a rare disease and how these kids manage their condition.
“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,” Seth 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.”
This is great work being done for a great cause — educating and relating to the young rare disease community. More of this, please!