Community. Education. Advocacy. Compassion.
A NON-PROFIT WORLDWIDE PATIENT SUPPORT ORGANIZATION FOR PEOPLE LIVING WITH X-LINKED HYPOPHOSPHATEMIA (XLH).
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🚨🚨REMINDER: the LETS Scholarship deadline is quickly approaching - SUBMIT YOUR APPLICATION TODAY! 🚨🚨
The Learning Empowers Those with Strength (LETS) Scholarship continues Bess's legacy by investing in individuals with XLH who are pursuing higher education, vocational training, certification programs, or other educational opportunities. The XLH Network, in partnership with the Indima Foundation, is awarding $5,000 to help a student in the XLH community reach their academic goals.
📌 Who is eligible? Applicants must have an official diagnosis of XLH and must be admitted or enrolled in an accredited educational program.
🗓️ Key Details & Deadlines: Applications Open TODAY and Deadline is September 15th!
👉 Next Steps: Every applicant will be contacted by our team to schedule an interview.
👉 Ready to apply? Fill out the LETS Scholarship Application Here: bit.ly/4w7yfsh
📧 Questions? Check out the XLH Network LETS Scholarship Page, visit our Main Website, or send an email to info@xlhnetwork.org.
#XLHNetwork #LETSScholarship #RareDisease #XLHAwareness #Scholarship #IndimaFoundation
💜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: JoBeth.Souza@xlhnetwork.org
We can't wait to see you there!
#XLH #RegionalEvent #Connect #Community #Support
🏈 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!
🔴⚪#XLHNetwork #XLHAwareness #IUFootball #JankosLittleZagreb #CartersCut #Hoosiers #CollegeFootball #RareDisease
Registration for XLH Day 2026 in Indianapolis is now open! Click HERE to reserve your spot!
Learn About XLH
X-Linked Hypophosphatemia (XLH)
is a rare genetic disorder affecting about one
in 20,000 people.
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Find a Doctor
Since XLH is a rare genetic disease, it can be difficult to find doctors with relevant experience diagnosing and treating XLH.
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Join Our Community
Become a member of the XLH Network today. The XLH Network is the main hub of connection and support for those living with XLH.
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The XLH Network supports families and individuals living with X-Linked Hypophosphatemia (XLH).
Our mission includes promoting awareness and education, providing opportunities for connection and community, and to foster the search for a cure.
Our vision is early, accurate diagnosis; readily-available, well-managed treatment; and healthy quality of life for those who are affected with XLH and related disorders.
The XLH Network is proud to be affiliates of:
Network Events
XLH Day 2026
Indianapolis
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We’re creating healthier, happier lives for those with XLH. Will you help us?
Contact Us
The XLH Network, Inc.
911 Central Ave., #161
Albany, NY 12206
XLH Network
A Worldwide Patient Support Organization for People Living and Dealing with X-Linked Hypophosphatemia (XLH)
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