The XLH Network, Inc.

10/04/2026

10/03/2026

💜🩵🏈🥩😍
Thank you so much for having us, Janko’s Little Zagreb! And, a huge thank you to Carter Smith and his family for supporting the XLH Network. Eating a delicious meal and spreading XLH awareness is a TOUCHDOWN in our playbook!!!

We had the honor of welcoming Carter Smith along with his friends and family to Janko’s for a special evening centered around the people behind Carter’s Cut and the mission behind it.

Everyone gathered around the table to enjoy Carter’s Cut while helping bring greater awareness to XLH (X-linked hypophosphatemia), a rare genetic disorder that has touched Carter’s family personally.

Thank you to Carter, your family and friends for sharing your evening with us.

Carter’s Cut — good food, a meaningful cause, and a table full of people who care.

10/02/2026

Calling all Pup Squad families! 🐾✨

Our next meeting is officially scheduled for Sunday, October 11, and we have such an exciting day planned! We absolute cannot wait to cheer on our amazing kids during the talent show and get creative together with a fun crafts activity. 🎨🎤

Make sure to mark your calendars—you won't want to miss this one!

Drop a ❤️ or comment below if your squad is coming! 👇

09/30/2026

📚 ¡Ya está disponible! / Now Available!

Celebrate Hispanic Heritage Month with a great read! KB & Nash is now officially available in Spanish.

Grab your copy today on Amazon!

🔗 Get it here: https://a.co/d/061D8HTz

09/28/2026

A year of planning.
1,723 emails.
42 meetings.
10 speakers.
12 volunteers.
A few last-minute changes. 😅
Probably not enough sleep.
And more zebras than anyone could possibly count. 🦓

And somehow… WE MADE IT!

The journey to Indy begins today! ✈️🚗🧳

Safe travels, everyone! We can’t wait to welcome you, hug some old friends, meet some new ones, and finally watch a year of planning come to life.

XLH Day 2026 — here we come! 🦓

09/23/2026

🦓Join Us in Washington, DC! 🦓

Applications are now open for travel scholarships for Rare Disease Week on Capitol Hill, provided by the RARE Foundation! Don't miss this opportunity to attend Rare Disease Week in Washington, DC and advocate for the XLH community!

If you are planning on going to Rare Disease Week or if you have questions about attending, please email Shannon Sharp at: [email protected]

When: March 2 – March 4, 2027

Where: Washington, DC

Travel Scholarship Website: https://tinyurl.com/3btadkkd

Travel Scholarship Deadline: Friday, November 6th

09/21/2026

It's almost time! If you're headed to Indiana for XLH Day, watch your email this week for last-minute announcements! We can't wait to see you!

09/16/2026

💜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: [email protected]

We can't wait to see you there!

09/15/2026

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: https://forms.cloud.microsoft/Pages/ResponsePage.aspx?id=xjTQoDsR7Eaef742VsrH5btpRO0Y0GpClehMLUVeHK9URFA3V1pMSFpGNDNMN1U4OFRUODZHTFVETS4u

09/14/2026

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!