Resources

A family living with XLH

Looking for more information
about X-linked hypophosphataemia (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.

WEBSITES

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.