REGISTRATION FOR XLH DAY 2026 IS CLOSED. PLEASE WATCH THIS SPACE FOR DETAILS ABOUT 2027!

The XLH Network, Inc.

5 days ago

💜TEXAS UPCOMING REGIONAL EVENT!💜

We are so excited to host an upcoming regional event in Kerrville at the Texas Lions Camp! Come connect with familiar faces, meet new friends, and have fun in a welcoming and inclusive space.

🤩Huge THANK YOU to Texas Lions Camp for providing the space for The XLH Network, Inc. to hold this regional event and to one of our Network Members, Josef, for orchestrating!

🔸When: Saturday, October 10th, 2026
🔸Time: 1pm-5pm CST
🔸Where: Texas Lions Camp | 4000 Highway 27 | Kerrville, TX 78028
🔸RSVP: Aly.Way@xlhnetwork.org

We can't wait to see you there!

#XLH #RegionalEvent #Texas #Community #Support ... See MoreSee Less

The XLH Network, Inc.

6 days ago

The XLH Network, Inc. is seeking new Board Members.

Are you a leader who wants to use your experience and expertise to make a meaningful difference in the rare disease community?

The XLH Network, Inc. is a nonprofit organization dedicated to supporting, educating, and advocating for individuals and families affected by X-linked hypophosphatemia (XLH)—a rare, lifelong genetic disorder that affects phosphate regulation and can significantly impact bone health, mobility, and quality of life.

As we continue to grow our organization and strengthen our impact, we are looking for individuals who are passionate about our mission and interested in contributing their leadership, skills, and perspective at the Board level.

We welcome candidates with experience in areas such as:

• Nonprofit or organizational leadership
• Finance and accounting
• Fundraising and development
• Marketing and communications
• Healthcare or research
• Legal or governance
• Strategic planning
• Advocacy and community engagement

You do not need to have XLH or prior rare-disease experience. What matters most is a commitment to our mission, a willingness to contribute, and a desire to help make a lasting difference.

Serving on the Board of The XLH Network is an opportunity to help shape organizational strategy, strengthen our advocacy efforts, expand awareness, and ensure that the voices and needs of the XLH community remain at the center of our work.

If you—or someone in your professional network—may be interested, we invite you to connect with us and learn more about this opportunity.

Together, we can help build a stronger future for everyone affected by XLH.

Apply here: forms.cloud.microsoft/Pages/ResponsePage.aspx?id=xjTQoDsR7Eaef742VsrH5btpRO0Y0GpClehMLUVeHK9URFA3...

#XLH #raredisease #RareDiseaseAdvocacy #boardmembers #patientadvocacy #thexlhnetwork ... See MoreSee Less

The XLH Network, Inc.

7 days ago

Are you coming to XLH Day in Indy? Want to dress up for Saturday night’s dinner—but skip the uncomfortable fancy shoes?

You’re in luck! This year’s Saturday night dinner theme is Sneaker Night!

Dress it up, dress it down, or mix it up. Wear your sneakers with a fancy skirt, dress pants, or whatever makes you feel great. The goal is simple: look fabulous, have fun, and be comfortable.

So lace them up and rock your favorite sneakers—we can’t wait to see your Sneaker Night style! ... See MoreSee Less