Join us for XLH events!
Explore events featuring the latest insights on X-linked hypophosphatemia (XLH) and opportunities to hear from others in the community:
- Virtual and live, in-person events available throughout the year
- Virtual events hosted online via Zoom; no downloads required
- Accessible from any device with an internet connection
View event details below, and sign up for reminders so you never miss one.
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Navigating XLH and the Transition to Adult Care
Tuesday, August 11, 2026
- JoBeth, caregiver and mother to Karabeth
- Karabeth, living with XLH
- Bonnie Smeryage, NP
- 7:30 PM EDT / 4:30 PM PDT
- 9:30 PM EDT / 6:30 PM PDT
Sign UpTransitioning from pediatric to adult care can be a big adjustment, but proactive planning can make the process smoother. This session will provide ideas on maintaining continuity of care, gaining confidence to advocate for yourself, and adjusting to new healthcare settings.
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XLH Through the Ages
Tuesday, October 13, 2026
- Shannon, living with XLH
- Dr. Mark Nunes, MD
- 7:30 PM EDT / 4:30 PM PDT
- 9:30 PM EDT / 6:30 PM PDT
Sign UpExplore how XLH symptoms may change across every stage of life—from childhood through older adulthood—and hear how individuals and families navigate the evolving physical, emotional, and everyday impact of living with XLH. This educational presentation also highlights the importance of ongoing care, support, and community connection along the journey.
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Coming soon
Stronger Together: XLH Families in Conversations
Saturday, October 3, 2026
- Emily, living with XLH
- Connie, living with XLH
- Dr. Nancy S. Dunbar, MD, MPH
- Dr. Mark Nunes, MD
Sign Up For RemindersKyowa Kirin is excited to be an invited guest at the XLH Network’s XLH Day 2026! This link is intended only for those participating virtually.
This session will explore how XLH can run in families and the importance of having conversations with undiagnosed family members to help encourage or motivate them to seek a diagnosis and/or treatment. A medical expert will share information and an individual living with XLH will share her story of helping family members seek a diagnosis and support.
This event is not yet available for registration. Please check back soon.
Frequently asked questions
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These events are intended for individuals in the United States living with XLH and their families and caregivers
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Identify the event you would like to attend, click the sign up button, and complete the registration form. Once you have signed up, you will receive a confirmation email with program details
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We recommend downloading the Zoom app in advance for the best experience, but you can also join using a web browser
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If you are having difficulty with the online registration, please call 1-844-648-0700
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Check your spam or junk folder first. If you still can’t find the email, contact 1-844-648-0700 at least a day before the event
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No, there is no cost to attend these programs
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Pre-registration is required for all virtual events. Upon registering and about 1 day before the event, you will receive a confirmation email with the login information and event URL. These emails include helpful information about logging in to the session and a help desk phone number to call if you are having difficulty connecting
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For online events, please log on to the session 5 minutes before the start of the program
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If you try to join early, you may see this message. Please wait until the start time
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Zoom is a video conferencing and communications platform that allows users to connect with video, audio, phone, and chat
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No, you do not need a Zoom account to join the online event. Simply use the link provided in your confirmation or reminder email
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Yes, you can join from a smartphone or tablet using the Zoom app. Make sure you have a stable internet connection
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No, attendees will be automatically muted and your camera will be off
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Yes, there will be a Q&A feature during the session. You can type your questions into the Q&A box at any time
COMM-US-RDS-1002 August 2026