About Us

We are engaged members of the XLH community who joined together and created the Canadian XLH Network to accomplish four key goals.


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, and those affected by XLH


To collaborate with other organizations to support Canadians affected by XLH

Our story

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.

Our Team


Shari-lin Van Vugt


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Shari is a founding member of the Canadian XLH Network. Her daughter was diagnosed with a spontaneous case of XLH in 2008 at the age of 4. Shari has been involved in the XLH community since 2011 after attending the first XLH Day in New York State. Her focus in leading the Canadian XLH Network is ensuring that access to healthcare and new treatments is made available to all Canadian XLH patients. Shari lives with her husband and daughter in Kitchener, Ontario.

Danielle Steenbergen

Vice Chair

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Danielle became involved in the Canadian XLH Network in it’s formative stages, motivated by her own battles with XLH, and committed to advancing awareness for the XLH community. She inherited XLH from her mother, then passed the mutated gene onto her two young boys, both of whom were diagnosed as infants. Danielle resides in Ontario with her husband and sons, where she runs her own Hair Salon. In her spare time she enjoys gardening, reading, writing, playing guitar, and traveling with her family.

Maddie Lucio


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Madison became involved in the Canadian XLH Network early on. Madison has a spontaneous case of XLH which has given her a very different perspective. She is motivated to create awareness amongst the general population and health care professionals to ensure the best patient care. As treasurer Madison plans to work on finding grants and introduce fundraising initiatives to support the Canadian XLH Network and families impacted by XLH. Madison currently resides in Ontario and is an elementary French teacher.

Josie Campbell


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XLH has always been a part of Josie’s life. She inherited the condition from her mother so subsequently was diagnosed shortly after birth. Her 2 brothers, 2 sons and 3 nieces are all affected as well. This has sparked Josie’s interest in taking extra measures to advocate for herself, her family, and other Canadians with XLH to be able to receive the best care and medications available. Josie lives in the small town of Watford, Ontario and works as an elementary school teacher.

Canadian XLH Network Extended Team

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