A Canadian patient support organization for people living and dealing with X-Linked Hypophosphatemia (XLH)

our mission

The mission of the Canadian XLH Network is to work as a collective to raise awareness surrounding XLH and advocate for patients; to ensure all Canadians have access to the best possible treatment(s); to promote education amongst health care professionals, affected families and the public surrounding XLH; to collaborate with other like-minded organizations and to support affected individuals across Canada, and their families, to ensure they are coping and have a better understanding of the disease.  

What is XLH?​

X-Linked Hypophosphatemia (XLH) is a rare genetic disorder that affects about one in 20,000 people. The key characteristic of XLH is a low level of phosphorus in the blood, called Hypophosphatemia. When a person is affected by XLH, their kidneys do not properly handle Vitamin D and phosphorus. This causes a variety of symptoms and disorders that usually affect their bones and teeth.

community

Come join our growing communities of XLH families and friends. Our social community pages are a great place to connect with others that are dealing with XLH, share your experiences and support each other.

BLOG

Thoughts, ideas, tips and stories related to life with XLH, click below to read our latest posts!

Interested in becoming a Volunteer?

We are looking for volunteers to help our non-profit support the Canadian XLH community. If you’re interested in getting involved, please click on the link below and fill out an application.

Email us at [email protected] if you have any questions.

XLH STORIES

A Force To Be Reckoned With – Taryn's Story

For the first year of her life, Taryn Vasarhelyi’s rare diagnosis eluded her parents and doctors. Now a resilient and thriving 13-year-old, her success is a testament to the importance of increased awareness and early intervention. Please visit the article in Macleans below for the full story.

Stepping Forward – Sarah's Story

For years, Sarah Bernard struggled to manage the many challenges posed by X-linked Hypophosphatemia (XLH). When her son, Elliot, was diagnosed with the same condition, she vowed to do whatever was necessary to make his experience easier than hers had been.

HELP US INCITE CHANGE!

Use our easy template to email your Member of Provincial Parliament (MPP) or Member of Legislative Assembly (MLA) and help get the word out that Crysvita should be available to ALL who need it. You can find the contact information for your representative in the drop down menus below (organized by Province/Territory) — for your letter you will to include their Name, Email Address, Address, and Phone Number. 

Find your MPP/MLA here

Find your MPP/MLA here

Find your MPP/MLA here

Find your MPP/MLA here

Find your MPP/MLA here

Find your MPP/MLA here

Find your MPP MLA here

Find your MPP/MLA here

Find your MPP/MLA here

Find your MPP/MLA here

Find your MPP/MLA here

Find your MPP MLA here

Find your MPP/MLA here

Email us at [email protected] if you have any questions.

Upcoming virtual events

XLH Community D’EH” Save the date! XLH Community D’eh is a virtual community day hosted by the Canadian XLH Network in celebration of International XLH Day on October 23rd from 2-4PM (EST). Come join the fun! Register below:

 

PREVIOUS webinar

Starting the Conversation: What Patients and Families Living with X-Linked Hypophosphatemia Need to Know” was an informational webinar led by leading experts Dr. Erik Imel (Indiana University) and Dr. Leanne Ward (University of Ottawa) that was held on September 14th, watch the recording below and at kidsbonescanada.org.

 

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