Canadian XLH Network

10/09/2026

📍 This International XLH Awareness Campaign, members of the International XLH Alliance have come together to examine one simple question:
Can people living with XLH access the care they need?

🗺️ Across 32 countries and regions, our survey reveals both encouraging progress and significant inequalities.
Over the coming weeks, we’ll be sharing what our global community told us about access to treatment, health equity, and why more must be done to ensure nobody is left behind.

10/03/2026

09/26/2026

Shari-lin Martin Van Vugt and Danielle Steenbergen are representing The Canadian XLH Network at the International XLH Alliance Meeting in Krakow, Poland.

We are looking forward to welcoming Members of the International XLH Alliance to Krakow for our 2026 Members Meeting!

This is a valuable opportunity to come together as a global community, strengthen connections, share experiences, and work collaboratively towards improving the lives of people and families affected by XLH.

Over the coming days, we’ll be sharing ideas, learning from one another, and looking ahead to how we can continue to amplify the patient voice and drive meaningful change across countries and communities.

07/20/2026

https://www.surveymonkey.com/r/CA_Rare_Readiness_Survey

CORD is inviting members of the rare disease community in Canada, including patients, caregivers, clinicians, researchers, patient organizations, policy partners, and health-system leaders, to participate in the Rare Disease Readiness Survey.

Survey link: https://www.surveymonkey.com/r/CA_Rare_Readiness_Survey

This survey will help identify where patients and families get stuck, which readiness gaps matter most, what supports are missing, how diagnosis, treatment, care coordination, data, and equity should be assessed, and what practical actions could improve rare disease care over the next 12–18 months.

07/01/2026

🇨🇦 Happy Canada Day from all of us at the Canadian XLH Network! ❤️🤍

Today, we celebrate the people, cultures, and communities that make Canada so special. We also recognize that for many, this day is a time of reflection, listening, and learning as we acknowledge the histories and experiences of Indigenous Peoples and continue working toward reconciliation.

At the Canadian XLH Network, we're grateful to be part of a community built on compassion, resilience, and hope. Every family, caregiver, healthcare professional, researcher, volunteer, and advocate helps make Canada a stronger, more inclusive place for those living with XLH.

Wherever and however you're spending today, we hope you find moments of connection, joy, and belonging.

From our XLH family to yours, Happy Canada Day. 🍁

06/23/2026

💜🤍 Today is XLH Awareness Day! 🤍💜

Today, landmarks across Canada are lighting up purple and white in support of the XLH community—from coast to coast, helping shine a light on a rare disease that deserves greater awareness and understanding.

X-linked hypophosphatemia (XLH) is a rare genetic disorder that affects the body's ability to regulate phosphate, a mineral essential for healthy bones and teeth. Children and adults living with XLH can experience bowed legs, bone and joint pain, fatigue, dental issues, mobility challenges, and other lifelong complications. While XLH is rare, the impact it has on individuals and families is significant.

Tonight, we're celebrating the strength, resilience, and advocacy of everyone affected by XLH while continuing to educate Canadians about this often-overlooked condition.

📸 CONTEST ALERT! 📸

Visit one of the many landmarks lighting up purple and white today and snap a photo!

➡️ Post your photo on social media
➡️ Tag the Canadian XLH Network
➡️ Share it before the end of XLH Awareness Day

Participants will win an official Canadian XLH Network t-shirt! 💜

Let's flood social media with purple and white and show Canada the power of the XLH community.

Together, we are making XLH visible.

06/22/2026

💜🤍 XLH Awareness Day Light-Up Announcement 🤍💜

London is lighting up for XLH Awareness Day!

We're proud to announce that the City of London, Ontario, will illuminate several prominent landmarks in purple and white on June 23rd in recognition of XLH Awareness Day:

✨ London City Hall
✨ J. Allyn Taylor Building
✨ Canada Life Place
✨ RBC Place London

Together, these landmarks represent the heart of London's civic, business, and community life. From local government and public service to entertainment, events, and economic development, these buildings help shape the vibrant spirit of the Forest City.

On June 23rd, they will shine purple and white to help raise awareness for X-linked hypophosphatemia (XLH), a rare genetic disorder that affects phosphate regulation in the body, leading to weakened bones, chronic pain, dental issues, fatigue, and mobility challenges.

The support of the City of London is especially meaningful as it helps bring visibility to the thousands of Canadians living with rare diseases. Each landmark illuminated for XLH Awareness Day sends a powerful message of awareness, inclusion, and support to individuals and families affected by XLH.

💜 A heartfelt thank you to the City of London and all participating venues for helping shine a light on XLH and supporting the rare disease community.

If you're in London, be sure to visit these locations, take a photo, and share it with us. We'd love to see the Forest City glowing in support of the XLH community!

06/22/2026

💜🤍 XLH Awareness Day Light-Up Announcement 🤍💜

We're excited to announce that the Vancouver Convention Centre will be illuminated in purple and white on June 23rd in recognition of XLH Awareness Day!

Situated along Vancouver's stunning waterfront, the Vancouver Convention Centre is one of Canada's premier gathering places, welcoming visitors from around the world for major conferences, events, and celebrations. Adjacent to the Convention Centre stands the iconic Olympic Cauldron, a lasting symbol of the spirit, unity, and legacy of the 2010 Winter Olympics.

On June 23rd, this remarkable waterfront landmark will shine purple and white to help raise awareness for X-linked hypophosphatemia (XLH), a rare genetic disorder that affects phosphate regulation in the body, leading to weakened bones, chronic pain, dental issues, fatigue, and mobility challenges.

The participation of the Vancouver Convention Centre and the Olympic Cauldron is especially meaningful. As symbols recognized both nationally and internationally, they help bring visibility to the XLH community and remind us that awareness can inspire understanding, support, and meaningful change.

💜 A heartfelt thank you to the Vancouver Convention Centre for helping shine a light on XLH and supporting rare disease awareness.

🌟 Stay tuned as we continue announcing more landmarks across Canada that will be lighting up in purple and white for XLH Awareness Day on June 23rd.

If you're in Vancouver, be sure to visit the waterfront, capture a photo, and share it with us. We'd love to see this iconic landmark glowing in support of the XLH community!

06/22/2026

💜🤍 XLH Awareness Day Light-Up Announcement 🤍💜

We're thrilled to announce that the iconic Toronto 3D Sign at Nathan Phillips Square will be illuminated in purple and white on June 23rd in recognition of XLH Awareness Day!

As one of Toronto's most recognizable landmarks, the Toronto Sign has become a symbol of the city's diversity, vibrancy, and community spirit. Located in front of Toronto City Hall, it welcomes millions of visitors each year and serves as a backdrop for celebrations, cultural events, and moments that bring people together.

On June 23rd, the Toronto Sign will shine purple and white to help raise awareness for X-linked hypophosphatemia (XLH), a rare genetic disorder that affects phosphate regulation in the body, leading to weakened bones, chronic pain, dental issues, fatigue, and mobility challenges.

The illumination of this beloved landmark in Canada's largest city is a powerful reminder that rare disease awareness belongs in the spotlight. Every landmark that lights up helps amplify the voices of individuals and families living with XLH and fosters greater understanding and support within our communities.

💜 A heartfelt thank you to the City of Toronto for helping shine a light on XLH and supporting rare disease awareness.

🌟 Stay tuned as we continue unveiling more landmarks across Canada that will be lighting up in purple and white for XLH Awareness Day on June 23rd.

If you're in Toronto, be sure to stop by Nathan Phillips Square, snap a photo, and share it with us. We'd love to see Toronto glowing in support of the XLH community!