XLH Resources

Being affected with a rare condition or being a parent or caregiver of a child with a rare condition can be daunting and life-changing.

Equipping yourself with knowledge and information is a great first step toward managing the symptoms of XLH. Here are some more educational resources to help support you.

NATASCHA’S STORY

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FOR PATIENTS AND CAREGIVERS

XLH Patient Brochure

Learn about the basics of XLH by downloading this resource.


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CAREGIVER RESOURCE BROCHURE

This resource is for people caring for or living with someone with XLH and provides tips and support to help them better manage their day-to-day activities and live well together.


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XLH FAMILY SUPPORT GUIDE

If you or your child has XLH, find out what that could mean for your family and how to get the support you need. Use this brochure to help you understand the symptoms and cause of XLH, learn how XLH can be inherited, and explore how to manage the disease.


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ASSESS YOUR CHILD’S GROWTH

Stunted growth and short stature are common in people with XLH and this can have a lasting mental and emotional impact. Use the tools in this resource to calculate your child’s height and learn more about how height is connected to genetics and XLH.


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XLH MONITORING GUIDE

This brochure gives you information about symptom progression and what you can expect as you monitor your or your child’s condition over time.


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XLH TRANSITION OF CARE GUIDE

This guide will introduce you and your child to the transition process from a pediatric to an adult healthcare provider. Use it with the XLH Transitions Toolkit to help assess your child’s transition readiness and organize medical information to help ensure your child’s continued management with no interruption of care.


Download

FOR SCHOOL FACULTY

THE ABCs OF XLH: A GUIDE FOR TEACHERS

Provide this resource to your child’s teachers at school to help educate them about XLH and what XLH may mean for their student.


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KID’S GUIDE TO TALKING ABOUT XLH AT SCHOOL

This resource guides children on how to talk about XLH with friends and teachers while helping them think about their unique experiences with XLH.


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Ultragenyx-Sponsored Programs

XLH Events Patient Programs

Search for programs for individuals with XLH, families, and caregivers.

XLH Events logo

BeyondXLH

BEYONDXLH is an online disease-monitoring program for patients with XLH and other chronic hypophosphatemic disorders.

BeyondXLH: disease monitoring logo

 

Other Resources

The XLH Network

Connecting with the XLH community may provide additional insight and support for patients, parents, and caregivers. The XLH Network is a worldwide community of XLH patients, parents, caregivers, and medical professionals.

XLH Network logo

NIH Genetic and Rare Diseases Information Center (GARD)

GARD maintains a list of rare diseases and related terms to help people find reliable information.

Genetic and Rare Diseases Information Center logo

National Organization for Rare Disorders (NORD)

NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.

National Organization for Rare Disorders logo

Global Genes

Global Genes is a rare disease patient advocacy organization that works to build awareness, educate the global community, and provide connection and resources.

Global Genes: Allies in Rare Disease logo

 

Ultragenyx-sponsored Social Resources

Suspect XLH in yourself or your child?

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