Support and stories from people living with PH1

Find support and patient stories for people living with PH1. Don't miss the Caregiver's section below for helpful resources.

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Discussion Guide Preview Discussion Guide Preview

Discussion Guide: Could Kidney Stones Be a Sign of PH1?

If you think you or your family member may have PH1, use this discussion guide to help you have a productive conversation with your healthcare provider.

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PH1 Handbook Preview PH1 Handbook Preview

PH1 Handbook

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

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PH1 Perspectives: Hear From Your Peers

A series focused on the true stories of real patients

Understanding Disease Progression - Video

PH1 Perspectives: Understanding Progression

Describing Primary Hyperoxaluria Type 1 - Video

PH1 Perspectives: Describing PH1

Journey to PH1 Diagnosis - Video

PH1 Perspectives: Journey to Diagnosis

Genetic Testing - Video

PH1 Perspectives: Experience with Genetic Testing

Facing an Invisible Disease - Video

PH1 Perspectives: Facing an Invisible Disease

Seth - Living with PH1 - Video

PH1 Perspectives: Seth - Living with PH1

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Emotional Support

If you’re struggling emotionally or have troubling thoughts about your disease, you can find help through the National Institute of Mental Health.

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Alnylam Act®: One option for genetic testing and counseling

If you haven’t been diagnosed with PH1, you or your healthcare provider can request genetic testing and counseling through the Alnylam Act® program offered at no charge, if you meet certain criteria. The test is done using a blood, saliva, or buccal sample. Siblings and family members may also be tested through Alnylam Act®.

The Alnylam Act® program was created to provide access to genetic testing and counseling to patients as a way to help people make more informed decisions about their health.

  • While Alnylam provides financial support for this program, tests and services are performed by independent third parties
  • Healthcare professionals must confirm that patients meet certain criteria to use the program
  • Alnylam receives de-identified patient data from this program, but at no time does Alnylam receive patient-identifiable information. Alnylam uses healthcare professionals’ contact information for research and commercial purposes
  • Genetic testing is available in the US and certain other countries. Genetic counseling is only available in the US
  • Healthcare professionals or patients who use this program have no obligation to recommend, purchase, order, prescribe, promote, administer, use, or support any Alnylam product
  • No patients, healthcare professionals, or payers, including government payers, are billed for this program
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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 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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Downloads for caregivers

Guide to Growing Up with PH1

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. It also includes an age-appropriate activity book for children.

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My PH1 Info Sheet Preview

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 some people with PH1 must drink lots of water, and may not always feel well.

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Communities for caregivers

Connect with a broader network of people who may be experiencing the same
things as you:

Communities for anyone with PH1

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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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