The XLH Network, Inc.

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The XLH Network, Inc.

The Official page of The XLH Network, Inc.

02/04/2026

Did you know?
Over 300 million people worldwide live with a rare disease — that’s nearly 4% of the global population.

Among these rare conditions is X‑Linked Hypophosphatemia (XLH) — a lifelong, genetic bone disorder that affects about 1 in every 20,000 people globally. That means there are roughly ~400,000 people around the world living with XLH today (xlhnetwork.org).

XLH impacts bone mineralization and can cause short stature, bone pain, dental issues, and more — affecting quality of life for individuals and families.
Though rare, we see each story, we hear each voice, and together we raise awareness and support.

Join us in spreading awareness and building community for everyone affected by XLH.

02/03/2026

♥️ Share the Love for Valentine's Day and support The Network!♥️

From now until February 14th, we invite you to send a Valentine's Day message from our adorable mascots, Link & Hope, to a special member of our XLH Community! Whether it's your best friend, partner, family member, or anyone else you appreciate, let them know you're thinking of them!

How to Share a Message:

1. Send your messages, along with the recipient's name(s) to office@xlhnetwork.org.

2. Suggested amount per message is $14, but any amount is warmly welcomed! Please send payments via venmo -inc or donate through our site xlhnetwork.org.

3. Stay tuned to our Facebook and Instagram pages to see your messages posted!

Spread the love and have fun!

01/26/2026

Meet "Hope" —advocating for our entire community this Rare Disease Day, February 28. When you purchase a shirt, you’re wearing awareness with pride and directly supporting the XLH Network. Stand out. Give Hope. Available in a wide variety of colors, sizes, and styles. bonfire.com/give-hope-for-xlh

01/21/2026

XLH Community — Have you taken action for ELSA in 2026 yet?

The cosponsor list is still growing, and every voice matters. We now have 38 cosponsors in the Senate and 122 in the House of Representatives, but continued outreach is essential.

The Ensuring Lasting Smiles Act (ELSA) would require health insurance plans to cover medically necessary oral and dental treatments for people with congenital and rare diseases like XLH—care that is often essential but currently excluded from coverage.

Please take a moment to contact your federal legislators and ask them to make ELSA a priority in 2026.

Take action today at www.nfed.org/elsa

Together, the XLH community can make a real impact.

01/19/2026

Meet "Hope" She's joined "Link" to represent the XLH Community on Rare Disease Day in February. Show your pride and change your profile picture to show your XLH Stripes! Download your own copy of "Hope" by clicking on the link in the comments.

01/09/2026

The XLH Network is proud to join NORD in the Show Your Stripes® campaign for Rare Disease Day on February 28 💙💚💜

Rare Disease Day is a powerful time for the rare community to come together and shine a light on the more than 10,000 rare diseases impacting over 300 million people worldwide.

One meaningful way to Show Your Stripes® is by helping our community light up buildings and landmarks in Rare Disease Day colors on or around February 28. Each light is a reminder that rare is everywhere—and so is our strength.

Email Shannon at Shannon.sharp@xlhnetwork.org
for a letter template you can use to request support from a landmark or business. Also, please notify us if someone commits to the project so they can be added to the national recognition list.

For more information about the national campaign, visit: https://rarediseases.org/rare-disease-day/light-up-for-rare/

Let’s stand together, raise awareness, and make rare visible. 🌈✨

01/07/2026

XLH Camp 2026 – Registration is Now Open!

Calling all XLH families! Get ready for a week of laughter, friendship, and unforgettable memories at XLH Camp. This is where kids with XLH connect, grow, and just be themselves in a supportive, fun environment.

When: July 21–25, 2026
Where: Camp for Courageous Kids, Scottsville, KY
Who: Children ages 5–17 diagnosed with XLH (parents and siblings are invited to attend)

Spaces are limited, so don’t wait—secure your spot today and give your child the gift of community, confidence, and camp adventures!

Need help getting to camp? Apply for a travel scholarship here: https://conta.cc/48PFbRz

Families can register using the link below:
http://app.campdoc.com/register/courageouskids
Registration is also available on https://www.courageouskids.org/ by clicking the “Apply Now” button.

01/05/2026

Have you seen our End of Year Newsletter? Read what to look forward to in 2026!https://xlhnetwork.org/wp-content/uploads/2026/01/The-XLH-Network-INC.-5.pdf

01/02/2026

Hey Pup Squad Kids!
Come pop into the New Year with your friends at our Pup Squad Meeting!

📅 January 11, 2026
⏰ 3:00 PM ET

Get ready for fun, laughs, and hanging out with kids who get it

Register here: https://zoom.us/meeting/register/PdYjOu1dRa2o8EwqhhUruA

01/01/2026

Happy New Year, XLH community!

A new year brings new opportunities to learn, connect, and continue building a stronger future for everyone impacted by XLH. Thank you for being part of this incredible family and for all you do to support, advocate, and care for one another. We can’t wait to see what we accomplish together in the year ahead.

12/31/2025

Navigating insurance and financial assistance with XLH can feel overwhelming—but support is available. Understanding your insurance plan can make a big difference in the year ahead.

In February 2026, the XLH Network will host “What You Need to Know About Insurance and Financial Assistance Programs.”

We want to hear from you.
💬 What questions do you have about insurance, The Assistance Fund, or Kyowa Kirin Cares?

Share below or email us privately at Shannon.Sharp@XLHNetwork.org

This session will be designed with your needs in mind. 💜

Address

911 Central Avenue, # 161
Albany, NY
12206

Website

http://xlhnetwork.org/

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