The ASBMR Annual Meeting:
Our Journey in Seattle

When you step into a room filled with the brightest minds in bone, mineral, and musculoskeletal research, there’s an undeniable energy. The American Society for Bone and Mineral Research (ASBMR) Annual Meeting is not just another conference—it’s the largest and most diverse gathering in the field, drawing more than 2,500 attendees from over 50 countries. For four days each year, clinicians, researchers, and advocates come together to share groundbreaking discoveries, compare notes, and forge partnerships that may one day change lives.

For us—the Canadian XLH Network, alongside our friends at the XLH Network (US)—this meeting is more than a chance to learn about the latest scientific breakthroughs. It’s an opportunity to bring the patient voice into the conversation. To remind researchers and clinicians that behind every data set and clinical trial are real families living with rare disease. To build bridges between advocacy groups and professionals so that together, we can work toward a brighter, healthier future.

This September marked our third time attending the ASBMR, and it was every bit as inspiring as the first. Hosted in Seattle from September 5th to 8th, the meeting gave us not only a front-row seat to scientific progress but also the chance to experience the culture and history of a truly unique city.

A Journey to the Emerald City

Shari and I set out early Thursday morning, catching a flight that would give us a buffer day to settle in and explore Seattle before diving headfirst into the conference. Traveling for advocacy is always a mix of business and personal commitment. As volunteers with day jobs back home, our trips require careful planning with our families support—but the reward is always worth it.

Landing in Seattle, we felt that immediate pull of the Pacific Northwest: the misty air, the backdrop of mountains, and the glittering skyline framed by water. We wasted no time playing tourist, booking tickets on the Salish Sea Tours for a cruise around Elliott Bay. As the boat skimmed across the water, we soaked in sweeping views of the cityscape, learning about Seattle’s rich history—from being home to the Duwamish Tribe, a Coast Salish people led by Chief Si’ahl (Seattle), to the days of the Klondike Gold Rush, which drew settlers from around the world, to its pop culture fame as the birthplace of grunge music. Fans of film and television will recognize Seattle from Sleepless in Seattle, Grey’s Anatomy, Frasier, and even Fifty Shades of Grey.

Our adventure didn’t stop there. That afternoon, we dove into Seattle’s darker past with the Underground Tour, a fascinating walk through the network of tunnels beneath the city streets. These passages, remnants of the Great Seattle Fire of 1889, once offered a fresh start but quickly became a hub for vice and crime. Wandering through the dim, musky tunnels, we could almost feel the weight of history pressing in. The guide’s stories of lawlessness and chaos brought the shadows to life—it was eerie, but unforgettable.

If you ever visit Seattle, we can’t recommend these tours enough.

The Discovery Hall

Friday morning, fueled by coffee and breakfast sandwiches, we strolled a couple of blocks from our hotel to the beautiful Seattle Convention Center, ready to dive into the ASBMR experience. Badges in hand, we entered Discovery Hall—the beating heart of the meeting.

The Exhibit Hall, appropriately named “Discovery Hall,” is an overwhelming, buzzing space. Nearly 1,000 poster presentations line the aisles, while exhibitors showcase their latest tools, treatments, and technologies. High-tech displays and interactive booths draw crowds, making the hall feel like a crossroads of science and possibility.

Our booth was far humbler than some of the elaborate set-ups around us, but what we lacked in flash we made up for in purpose. Our mission was simple: introduce researchers, clinicians, and industry leaders to XLH (X-Linked Hypophosphatemia) and emphasize the vital role of patient advocacy groups. We shared our story, explained the resources we offer, and highlighted why partnerships between patients and professionals are essential for progress.

It didn’t take long for connections to spark. Old friends stopped by, familiar faces from previous years. New introductions quickly turned into meaningful conversations. Some were fellow patients, eager to share their own journeys. Others were clinicians and researchers genuinely curious about how they could better serve the XLH community.

Every time we attend ASBMR, we walk away with at least one connection that feels like a turning point. This year, there were several.

• We met a gentleman from Quebec who offered resources to help us expand our reach into French-speaking communities—a challenge we’ve struggled with for years. His expertise could help us translate our materials and finally provide better support to patients who have felt left out due to language barriers.
• We also connected with a doctor from Ontario, a key figure in creating new global guidelines for treating children and adults with XLH. She expressed interest in distributing our advocacy materials directly in her clinics, helping us reach more patients and families across the province and beyond.

Moments like these remind us why we’re here. You never know whose hand you’ll shake, or how one conversation might ripple outward to change countless lives.

Breaking Bread with the Rare Bone Community

That evening, we had the privilege of attending a dinner hosted by the Rare Bone Disease Alliance (RBDA). The evening was a celebration of collaboration, with presentations highlighting recent achievements and recognition of members who have made significant contributions.

Sitting there, surrounded by individuals and organizations who share our vision, we were deeply moved. By the end of the evening, we knew we needed to be part of this group. We introduced ourselves, shared our story, and were warmly welcomed into the fold. Back at our hotel, we officially registered as members of the RBDA—a decision that feels like a natural next step in expanding our network of allies.

Learning From the Experts

Saturday morning began with a symposium focused on the implementation of new guidelines for XLH in clinical practice. It was eye-opening to hear directly from pediatric and adult specialists about what has worked, what hasn’t, and what changes they’d like to see moving forward.

Guidelines are only as strong as their application in real-world settings, and this session gave us a window into the challenges clinicians face when applying them. It was a reminder that science is always evolving, and that advocacy groups like ours play a role in ensuring patient experiences inform future changes.

Later, we reunited with a representative from the International Society for Children’s Bone Health (ISCBH), an organization dedicated to improving bone health for children worldwide through research, education, and advocacy. We were excited to learn that the 12th International Conference on Children’s Bone Health (ICCBH) will be held in Montreal in June 2026. We’ve already marked our calendars—and registered as members of ISCBH—to ensure that our community’s voice is represented at this important event.

Stories in the Posters

No trip to Discovery Hall is complete without diving into the poster sessions, where researchers share their latest data in a more informal, one-on-one setting. This year, we were particularly drawn to the work presented by Kyowa Kirin on Burosumab, the first treatment approved specifically for XLH.

Reading through the clinical data, we were struck by the tangible difference this therapy is making for patients across the globe. Numbers on a chart may look clinical, but for those of us who live with XLH or love someone who does, they translate into better mobility, less pain, and improved quality of life. We’re eager to bring these posters back to our community, to share the hope and progress reflected in the research.

A Taste of Seattle

Although our time in Seattle was brief, we couldn’t leave without one last night of exploring. After wrapping up our final day at the conference, we made our way to the famous Pike Place Market, wandering past stalls of fresh flowers, local art, and seafood vendors calling out to customers. We stopped at the first-ever Starbucks, a pilgrimage for coffee lovers, and ended the evening with a seafood dinner overlooking the water.

As luck would have it, Seattle was also celebrating the grand opening of a new section of its waterfront that weekend. Live music, dancing, food stalls, games, and art installations gave the city a festival-like feel. It was the perfect send-off before heading home the next morning.

Looking Toward the Future

The ASBMR Annual Meeting is more than a conference. It’s a reminder of how far science has come—and how much further we can go. The rapid pace of technological advancement is opening doors that once seemed unimaginable. Treatments for rare diseases like XLH are no longer distant dreams; they are real, tangible, and improving lives every day.

For us, the most important takeaway is the power of connection. Each handshake, each conversation, each shared story adds another thread to the web of collaboration that holds this community together. We return home motivated, inspired, and determined to continue building those bridges.

The Canadian XLH Network will keep showing up. We will keep sharing patient voices. And we will keep working toward a future where every person living with XLH has access to the best possible care and treatment.

Seattle reminded us of something vital: progress is never a solo effort. It’s a chorus of voices—scientists, clinicians, advocates, and patients—coming together with one shared goal. And together, we’re only just getting started.

I also would like to extend our heartfelt thanks to Kyowa Kirin, whose generosity helped make our attendance at the ASBMR possible this year. We are also deeply grateful to our friends at the XLH Network (US), who continue to guide and support us as we navigate the process of attending this incredible event. Their assistance makes all the difference, and we are stronger together because of it.