Canadian XLH Network

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!

06/22/2026

💜🤍 XLH Awareness Day Light-Up Announcement 🤍💜

We're excited to announce that Red Deer City Hall in Red Deer, Alberta, will be illuminated in purple and white on June 23rd in recognition of XLH Awareness Day!

Located in the heart of Central Alberta, Red Deer City Hall serves as a symbol of civic leadership, community engagement, and public service. As a gathering place for residents and an important landmark within the city, its participation helps bring greater visibility to the XLH community and the importance of rare disease awareness.

On June 23rd, City Hall 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.

Every landmark that lights up for XLH Awareness Day helps amplify the voices of individuals and families living with XLH. Together, we are fostering greater understanding, increasing visibility, and building a stronger community of support across Canada.

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

🌟 Stay tuned today 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 Red Deer, be sure to take a photo and share it with us. We'd love to see Alberta glowing purple and white in support of the XLH community!

06/21/2026

💜🤍 XLH Awareness Day Light-Up Announcement 🤍💜

We're delighted to announce that the Historic Bastion in Nanaimo, British Columbia, will be illuminated in purple and white on June 23rd in recognition of XLH Awareness Day!

Standing proudly on Nanaimo's waterfront, the Historic Bastion is one of the city's most treasured landmarks and a symbol of its rich history. Built in 1853, it is the oldest free-standing Hudson's Bay Company structure still standing in Canada and has become an enduring icon of Nanaimo's heritage and community spirit.

On June 23rd, the Bastion 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.

By illuminating this historic landmark, Nanaimo is helping bring greater visibility to the XLH community and demonstrating that rare disease awareness matters. Every landmark that lights up helps amplify the voices of individuals and families living with XLH and reminds them that they are seen, supported, and never alone.

💜 A heartfelt thank you to the City of Nanaimo 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 Nanaimo, we'd love to see your photos! Share them with us and help spread awareness from coast to coast.

06/21/2026

💜🤍 XLH Awareness Day Light-Up Announcement 🤍💜

We're thrilled to announce that the Peace Bridge, connecting Fort Erie, Ontario, and Buffalo, New York, will be illuminated in purple and white on June 23rd in recognition of XLH Awareness Day!

Spanning the Niagara River and linking Canada and the United States, the Peace Bridge is an internationally recognized symbol of friendship, cooperation, and connection. For nearly a century, it has served as a gateway between two nations, welcoming millions of travelers and fostering cross-border relationships.

On June 23rd, the Peace Bridge 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 Peace Bridge is especially meaningful, as XLH affects individuals and families around the world. This illumination serves as a powerful reminder that awareness knows no borders and that our community is stronger when we come together to support one another.

💜 A heartfelt thank you to the Peace Bridge Authority for helping shine a light on XLH and supporting the rare disease community on both sides of the border.

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

If you're in the Niagara region or Buffalo area, we'd love to see your photos! Share them with us and help spread awareness far and wide.

06/21/2026

This Father’s Day, we celebrate the dads, grandfathers, stepdads, and father figures in our XLH community.

To the fathers living with XLH, those raising children with XLH, and those who provide unwavering love, support, and encouragement every day—thank you. Your strength, resilience, advocacy, and dedication help make a difference in the lives of your families and our community.

Today, we honour the many ways you show up: through the challenges, the milestones, the appointments, the laughter, and the memories made along the way.

From all of us at the Canadian XLH Network, Happy Father’s Day. 💜