A Canadian patient support organization for people living and dealing with X-Linked Hypophosphatemia (XLH)
Join us for an in-person community event focused on mental health.
Date: October 22nd, 2023
Location: Best Western Stroneridge Inn & Conference Center in London, Ontario
Address: 6675 Burtwistle Lane, London, Ontario, Canada, N6L1H5
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.
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.
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.
Thoughts, ideas, tips and stories related to life with XLH, click below to read our latest posts!
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 canadianxlhnetwork@gmail.com if you have any questions.
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.
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.
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.
Email us at canadianxlhnetwork@gmail.com if you have any questions.
“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.