support
PH1 resources designed for you
Support for the primary hyperoxaluria type 1 (PH1) community, gathered into one place. Don’t miss our caregivers' resources section below.
Downloads
PH1 Handbook
This brochure provides an overview of PH1 management, monitoring and more.
Download PDFDownloads for caregivers
Guide to Growing Up With PH1
A brochure that provides educational information and tools for the caregivers of children with PH1. Topics include understanding PH1 progression and management, as well as tips for discussing PH1 with care team members and children.
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My PH1 Info Sheet
A handout that can be used to inform others on how PH1 affects you or your child on a day-to-day basis. The information on the handout explains how people with PH1 must drink lots of water, and may not always feel well.
Download PDFPH1 Patient Perspectives: Hear From Your Peers
A series focused on the true stories of patients
PH1 Perspectives: Understanding Progression
PH1 Perspectives: Describing PH1
PH1 Perspectives: Facing an Invisible Disease
Jörg’s story with PH1 – as told by his wife Stephanie
Becky’s story of being a mother of two children with PH1
Zoe’s story being diagnosed with PH1 as an adult
Margarita’s story of being a mother of a boy with PH1
Crafted for caregivers
Animated Series for Kids
Having a difficult time explaining primary hyperoxaluria type 1 (PH1) to your child? Watch this animated video series, developed by Alnylam in partnership with The Oxalosis and Hyperoxaluria Foundation (OHF), starring kids from around the world who have been diagnosed with PH1. Having this disease means that some of their daily experiences are different from those of other children, but PH1 doesn't define them—they’re truly PH1 of a Kind™.
Isabelle’s Story: Learning About PH1
Luuk's Story: Learning to Stay Positive
Asha’s Story: Learning About Doctors’ Visits
Will’s Story: Learning to Have Confidence
Communities for anyone with PH1
CORD
CORD is Canada’s national network for organizations representing all those with rare disorders. CORD provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders. CORD works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare disorders in Canada.
Kidney Foundation of Canada
Excellent kidney health, optimal quality of life for those affected by kidney disease, and a cure. This vision has guided us to be a collaborative, inventive and focused leader in the development of programs, services, research opportunities and awareness campaigns that have had a positive impact on the millions of Canadians living with, or at risk of developing kidney disease. The Foundation's national research program has grown to become one of the most important sources of funding for scientists conducting kidney-related research. The Foundation is committed to providing education, information and support about kidneys and kidney disease.
RQMO
RQMO provides rare disease patients and their families with Information, resources and support to help with managing rare disease. We connect people with knowledgeable physicians, researchers and clinics specialized in the disease, and official sources of information on medical management and treatment. We help patients find government and community resources to help with medical services; financial and legal help; respite and home care; and psychosocial support. We provide basic genetic counselling and answers questions about genetic tests, possible risks, prenatal diagnosis, etc.
PH1-CAN-00058 | November 2022