Resources

A family living with XLH

Being affected with a rare disease or being a parent or caregiver of a child with a rare disease can be daunting and life-changing. Equipping yourself with knowledge and information is a great first step towards managing the symptoms of XLH. Here are some more educational resources to help support you.

CANADIAN XLH NETWORK

The Canadian XLH netowork is a non-profit organization that aims to connect Canadians with XLH and promote XLH awareness in Canada.

The XLH Network

The XLH Network seeks to connect people around the world who are affected by or are interested in learning more about XLH. The XLH Network connects affected families, individuals and medical professionals.

CANADIAN ORGANIZATION FOR RARE DISORDERS (CORD)

CORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. The site also includes guidance about building an advocacy group or becoming a rare disease advocate.

Le Regroupement Québécois des Maladies Orphelines (RQMO)

RQMO is a group of associations dedicated to rare diseases and individuals affected by them (this site is in French).

RareConnect

RareConnect.org is a safe, easy to use platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages.

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.

NIH Genetic and Rare Diseases Information Center (GARD)

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

XLH Patient Brochure

Learn about the basics of XLH by downloading this resource

Download

Download French version

See the many faces of XLH.

Cheryl talks about staying positive to manage XLH

Meet Cheryl

“I can’t control the symptoms of my XLH, but I can control my attitude.”

You just have to check-in with your own body...I think the point should be to be have a good life.

Meet Gini

“You just have to check-in with your own body…I think the point should be to have a good life.”

Each we day we have to do a lot of things but XLH has made us stronger, better people.

Meet Melissa and Dillin

“Each we day we have to do a lot of things but XLH has made us stronger, better people.”

Learn about the role of phosphate in the body

The importance of phosphate in children with XLH

Learn about the role of phosphate in the body

Sean and James Cooney

“Living with XLH is a silent pain.”