The XLH Network, Inc.

The XLH Network, Inc. The Official page of The XLH Network, Inc.

💜UPCOMING REGIONAL EVENT IN NORTH CAROLINA!💜We are so excited to host an upcoming regional event in NC! Come connect wit...
08/21/2026

💜UPCOMING REGIONAL EVENT IN NORTH CAROLINA!💜

We are so excited to host an upcoming regional event in NC! Come connect with familiar faces, meet new friends, and have fun in an welcoming space. Kyowa Kirin will also be hosting a short, live presentation at this event.

🔸When: Saturday, September 12, 2026
🔸Time: 12pm ET
🔸Where: River Oaks Community Church | 1855 Lewisville Clemmons Rd | Clemmons, NC 27012
🔸RSVP: [email protected]

We can't wait to see you there!

08/19/2026

🏈 BIG NEWS, XLH COMMUNITY! 🥩

We are absolutely thrilled to announce an incredible new partnership with Indiana Football Team Captain Carter Smith and the legendary Janko’s Little Zagreb in Bloomington, IN!

Carter is using his platform to shine a massive light on X-Linked Hypophosphatemia (XLH), and we could not be more grateful for his support! 🙌

✨Starting now, when you visit Janko’s Little Zagreb, you can order "Carter’s Cut"—a massive 24oz ribeye steak served with 3 delicious sides.

🍽️The best part? A portion of the proceeds from every single "Carter’s Cut" ordered goes directly to the XLH Network to fund XLH education, support families, and drive awareness!

How You Can Support:

Dine Out: Head to Janko’s Little Zagreb in Bloomington and tackle the "Carter's Cut"!

Spread the Word: SHARE THIS POST to let your Hoosier friends and football fans know how they can eat great and do good.

Thank Carter: Drop a comment below to show Carter some XLH community love! 📋❤️

🏈💜🩵Thank you, Carter Smith, for drafting the XLH Network into your season. Let’s make a huge impact together!

🔴⚪

Dolphins or zebras? Why choose? At XLH Day 2026, you get both!Your registration includes free admission to the Indianapo...
08/18/2026

Dolphins or zebras? Why choose?
At XLH Day 2026, you get both!

Your registration includes free admission to the Indianapolis Zoo AND dinner at the Dolphin Pavilion—plus a full weekend of great programs, connection, learning, and time with your XLH dazzle.

It’s shaping up to be a can’t-miss weekend!

⏰ Registration closes August 31st!
Register now: https://conta.cc/4gl1JfA

⏰ Time is running out to register for XLH Day 2026!Registration officially closes August 31 — and we don’t want you to m...
08/17/2026

⏰ Time is running out to register for XLH Day 2026!

Registration officially closes August 31 — and we don’t want you to miss your chance to be part of this year’s XLH Day in Indianapolis.

Come connect with the people who understand, learn from XLH experts, ask questions, share experiences, and spend a weekend with your XLH community.

🦓 Follow Hope. Find Your Herd. Be Part of the Dazzle.

Register here: https://conta.cc/4wDY6Yw

Thank you to our amazing donors! Your generous support made XLH Camp an unforgettable experience for our XLH kids and th...
08/14/2026

Thank you to our amazing donors! Your generous support made XLH Camp an unforgettable experience for our XLH kids and their families, bringing joy, connection, and lasting memories to our community.

📌Save the Date - Upcoming Virtual Event! Register TODAY for an upcoming Virtual Event: Navigating XLH and the Transition...
08/05/2026

📌Save the Date - Upcoming Virtual Event!

Register TODAY for an upcoming Virtual Event: Navigating XLH and the Transition to Adult Care.

Event Description: The transition from pediatric to adult care can be a big adjustment, but proactive planning can make the process smoother. This session will provide insight on maintaining continuity of care, gaining the confidence to advocate for yourself, and adjusting to new healthcare settings.

Presenters: JoBeth, caregiver and mother to Karabeth, who is living with XLH | Karabeth, living with XLH | Dr. Bonnie Smeryage, NP

When: Tuesday, August 11th at 7:30PM ET/4:30PM PT (and) 9:30PM ET/6:30PM PT

Registration Link: https://www.xlhlink.com/patient-events/

You won't want to miss this!

🦷 XLH Community: We need your voice TODAY! 🦷If you or a loved one is living with XLH, then you know that spontaneous den...
07/29/2026

🦷 XLH Community: We need your voice TODAY! 🦷

If you or a loved one is living with XLH, then you know that spontaneous dental abscesses and massive unmet dental care costs are some of the hardest challenges that the XLH Community face. Today, we have a powerful chance to change this - but WE NEED YOU to TAKE ACTION.

We are calling on all members of the XLH Network and their loved ones to support the Ensuring Lasting Smiles Act (ELSA)!

📜 What is the ELSA Act? The goal of the Ensuring Lasting Smiles Act (ELSA) is to provide health insurance benefits for outpatient and inpatient treatment related to any congenital anomaly, like X-Linked Hypophosphatemia (XLH). This bill ensures that any procedure related to restoring function or appearance due to a birth defect or any congenital anomaly would be covered by insurance from birth until function is restored.

⏱️ It Takes Less Than 2 Minutes to Help:

1️⃣Click the link to use the online ELSA Advocacy Tool.
2️⃣Fill out your basic information.
3️⃣Add your personal story (optional, but highly encouraged!) to explain why dental coverage is critical for XLH patients.
4️⃣Hit submit! (Technically, you hit "Send Email" - but, you get it! Easy peasy)!

The online ELSA Advocacy Tool automatically formats a template and emails your specific Congressmen and Senators for you - it seriously could not be easier! You can be the change.

Over 70 patient advocacy and healthcare organizations are already backing this bill so let's make sure the XLH community is heard loud and clear on Capitol Hill! 📢💜💙

👉ELSA Advocacy Tool: https://ujoin.co/campaigns/2473/actions/public?action_id=5391 👈

🎟️ Early bird discount ends July 31!!!Planning to join us for XLH Day 2026 in Indianapolis? Register by Friday, July 31,...
07/27/2026

🎟️ Early bird discount ends July 31!!!

Planning to join us for XLH Day 2026 in Indianapolis? Register by Friday, July 31, to receive the early bird discount!

Don’t miss your chance to save—register today and get ready to Follow Hope and Find Your Herd.

07/25/2026

2026 XLH Camp was one for the books! Big thanks to our volunteers, CCK staff and your donations for making this possible for these wonderful campers and their families! Hey CCK - HOW DO WE FEEL?!



*we do not own the rights to this music*

Address

911 Central Avenue, # 161
Albany, NY
12206

Website

,

Alerts

Be the first to know and let us send you an email when The XLH Network, Inc. posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Shortcuts

Share

Category