The XLH Network, Inc.

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The XLH Network, Inc.

The Official page of The XLH Network, Inc.

08/27/2025

📚✏️ It’s back-to-school season!
For children living with XLH, school can bring unique challenges. From fatigue and pain to mobility needs, having the right support in place can make all the difference.

👉 Parents & caregivers: What school accommodations have you found most helpful for your child with XLH?

Examples might include:
Extra time between classes
Elevator access
Modified PE requirements
Rest breaks during the day
Flexible seating

Sharing your experiences helps raise awareness and can support other families navigating the school year. 💜

08/24/2025

🌟 Announcing the LETS Scholarship! 🌟

The XLH Network is honored to launch the Learning Empowers Those with Strength (LETS) Scholarship, created in memory of Laurel Elizabeth "Bess" Thomason Smith.

This scholarship will support students in the XLH community as they pursue their educational goals. 💜

📅 Applications open: August 25, 2025
📅 Applications due: September 30, 2025
🔗 Apply now at https://xlhnetwork.org

08/23/2025

On behalf of our partners, we are sharing this research opportunity.

08/22/2025

The XLH Network was founded as an international volunteer group of people living with, or interested in, X-linked Hypophosphatemia (XLH). Incorporated as a 510(c)(3) tax-exempt charity, the XLH Network currently supports over 2,500 members.

The XLH Network, Inc. is looking for dedicated individuals to join us in our mission to make a positive impact in our community. Please see the needed role descriptions.
Anticipated commitment: 5-10 hours/month

To Apply:
https://forms.office.com/r/QUDP2dcx33

The deadline for applications will be October 1, 2025.

08/18/2025

XLH Day 2025 is almost SOLD OUT! 🎉
Only 15 spots left before we reach our max capacity of 175 — don’t wait if you plan to join us! https://conta.cc/3IrcD6f

08/10/2025

🚨 Early Bird Discount Ends Soon! 🚨
Get 20% OFF XLH Day registration when you sign up by Friday, August 15th!
After that, regular registration runs until September 1st — but why wait?
🔗 Register today and save!
https://conta.cc/3IrcD6f

08/06/2025

Because of your incredible support, the XLH Network was able to make XLH Camp 2025 a reality! 🙌💛

From generous donations to sharing your time, energy, and encouragement — this camp wouldn't have been possible without the heart and strength of our amazing community. Together, we created a space where kids, families, and caregivers could connect, learn, and just be themselves.

Thank you for believing in the mission. Thank you for showing up. And thank you for helping us build memories that will last a lifetime. 🏕️💙

07/29/2025

🚨 Early Bird Alert!
XLH Day 2025 is filling up fast — and the Early Bird Discount ends August 15th!
Secure your spot, save money, and be part of an unforgettable day.

🎟️ Register now: https://conta.cc/3IrcD6f

07/18/2025

Missed the Scholarship Deadline for XLH Day? Don’t Panic!
You can still submit a scholarship application and be added to our waiting list. Waiting list applications will be reviewed on a first-come, first-served basis, so don’t delay—apply today! Go to: https://conta.cc/3IrcD6f

07/17/2025

We’re very excited to share that the XLH Network, Kyowa Kirin, and SmithSolve have been named finalists in two categories for the PR Daily’s 2025 Nonprofit Communications Awards for the XLH Community Impact Survey! Finalists will be recognized, and winners will be announced on September 26. This recognition is a testament to the hard work and collaboration over the last few years between the three entities. It is also a wonderful way to raise even more awareness for the XLH community! The XLH Network is honored to be a part of this important work and to have been nominated for this award.

07/16/2025

🎉 XLH Camp Costume Contest – We Need YOUR Help as Judges! 🎉

Calling all members of the XLH Network! Our XLH campers are ready to showcase their best costumes, and we want YOU to help us choose the winners in our Costume Contest each night at camp! 🦸‍♂️🦸‍♀️✨

The competition will feature Country and Western on Tuesday night, Music through the Decades Wednesday night, and Bohemian Campsady on Thursday night— and YOU get to decide who takes home the prizes! 🎭🏆 Our mascot Link has his costumes all ready for the contest!

💡 How to Participate as a Judge:

Keep an eye out for the official voting post next week on https://www.facebook.com/groups/xlhnetworkmembers

Vote for your favorite costumes and help us crown the champions!

Let’s make this contest a true celebration of the XLH spirit! 💜

Ready to get in on the fun? Stay tuned, and let the voting begin! 🎉

Address

911 Central Avenue, # 161
Albany, NY
12206

Website

http://xlhnetwork.org/

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