The Canadian XLH Network all began when two parents went on a mission to help their daughter with her spontaneous case of XLH. Realizing there weren’t many resources in Canada at the time, the parents did some research and crossed the border to attend the very first annual XLH Day in New York State, back in 2011. The life altering experience brought the family back year after year, with the opportunity to meet with specialized doctors, health care professionals, and other families just like their own. Their daughter was accepted into a study at Yale University in 2015, introducing them to the drug Crysvita (Burosumab injection). After years of struggling on the standard Phosphate treatment, this drug was life-changing for their daughter, allowing her body to regulate itself better and begin to heal. The family continued to attend these XLH Days in the United States, and noticed the one thing missing for them at these events was other Canadians. It became apparent that their fellow Canadians with XLH were unaware of the developments being made in their neighbouring country. It wasn’t until 2016 they finally met another Canadian family at Quinnpiac University in Connecticut, who also had a daughter with a spontaneous case of XLH. Motivated by the directors of the XLH Network and C.O.R.D, it was suggested these families formulate a Canadian XLH group. 

Finally, in April 2019 the family got the help they needed with the first ever Canadian XLH meeting, which took place in Hamilton, Ontario, and was led by Dr. Paul and Dr. Kahn. The event was an intimate gathering of XLH patients and caregivers, most of whom had never met anyone else with XLH outside of their own families. There was an immediate bond formed in the group, and a sense of duty passed on to each member that day. Enlightened with new information, shared stories, and a hope for a brighter future for all XLH patients, they took on the mission to advocate and spread awareness about XLH. From that day forward, the newly formed “Canadian XLH Network” began to grow and reach out to other Canadians with a connection to XLH, formulating a small team to help their mission. The group went on to host private meetings throughout 2019, and eventually established a team of twelve board members. In June of 2020, the Canadian XLH Network became incorporated as a Non-Profit organization. Since then, the Canadian XLH Network has partnered up in their mission with the International XLH Alliance, an organization that connects XLH groups worldwide to ensure that there is a global multi-disciplinary standard of care and research for all.

Together, the Canadian XLH Network hopes to connect all those affected by XLH, and welcome them into the community.