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.

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Downloads

PH1 Handbook

This brochure provides an overview of PH1 management, monitoring and more.

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Downloads 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.

Download PDF

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.

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PH1 Patient Perspectives: Hear From Your Peers

A series focused on the true stories of patients

Understanding Disease Progression - Video

PH1 Perspectives: Understanding Progression

Describing Primary Hyperoxaluria Type 1 - Video

PH1 Perspectives: Describing PH1

Facing an Invisible Disease - Video

PH1 Perspectives: Facing an Invisible Disease

 
Jörg’s story with Primary Hyperoxaluria Type 1 – Video

Jörg’s story with PH1 – as told by his wife Stephanie

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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™.

Watch Isabelle's Story

Isabelle’s Story: Learning About PH1

Watch Luuk's Story

Luuk's Story: Learning to Stay Positive

Watch Asha's Story

Asha’s Story: Learning About Doctors’ Visits

Watch Will's Story

Will’s Story: Learning to Have Confidence

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Communities for anyone with PH1

Emotional Support

Metabolic Support UK (formerly known as Climb) is the leading patient organisation for inherited metabolic disorders, supporting thousands of patients in the UK and worldwide. Metabolic Support UK can provide practical advice, information, and support to patients and their families from diagnosis to treatment and beyond.

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PH-Europe

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Oxalosis and Hyperoxaluria Foundation Logo

The Oxalosis & Hyperoxaluria Foundation (OHF)

The OHF is dedicated to finding treatments and a cure for all forms of hyperoxaluria, and supports thousands of healthcare professionals, patients and their families in their fight against this disease.

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PH1-CEMEA-00006    March 2021

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