The XLH Network, Inc.

02/21/2026

We are so sorry if you tried to attend the FB Live event. We had technical difficulties and will plan for later in the weekend.

02/20/2026

Did you know that 5% of the world’s population is living with a rare disease?

That’s hundreds of millions of people worldwide — each with a unique story, unique challenges, and a shared need for awareness, research, and access to care.

One of those rare diseases is X-linked hypophosphatemia (XLH) — a lifelong, genetic condition that affects the body’s ability to regulate phosphate.

Because XLH is rare, it is often misunderstood or misdiagnosed. Many families spend years searching for answers. Early diagnosis and proper treatment can make a life-changing difference.

Behind every statistic is a family navigating appointments, advocating for care, and fighting for a better future.

Rare is not alone.
Rare is strong.
And together, our voices matter.

02/18/2026

Join us Friday, February 20 at 7:00 PM EST for a LIVE chat on Facebook with members of our XLH Advocacy Team as we discuss Rare Disease Week and the importance of advocating for X-linked hypophosphatemia (XLH).

Come learn how we’re raising our voices, sharing our stories, and working to create meaningful change for the XLH community. We hope to see you there!

02/14/2026

02/14/2026

Last day to get your vday grams out! Send'em over and we'll post them! 💜

02/14/2026

Linking love to the Pup Squad! 🥰🥰

02/13/2026

XLH Kids Camp Registration is OPEN!

Calling all kids with X-Linked Hypophosphatemia (XLH)! Join us for a week of fun, friendship, and unforgettable memories at XLH Kids Camp, July 21–25.

What to Expect:

-Outdoor adventures & games
-Arts & crafts
-Opportunities to connect with other XLH kids
-Supportive environment where everyone understands XLH

Dates: July 21–25
Location: Center for Courageous Kids, Scottsville, KY
💻 Register now: https://www.courageouskids.org/

Travel Scholarships available! Travel assistance may be offered—apply early to secure your spot. https://conta.cc/48PFbRz

Let’s make this summer one to remember!

02/12/2026

We love love and we love moms! 🥲

02/12/2026

More Vday grams for some new friends!! 🥰🥰

02/11/2026

February is Rare Disease Month!

Did you know that 70% of genetic rare diseases start in childhood? X-linked hypophosphatemia (XLH) is one of these rare conditions.

Key facts about XLH:

-XLH affects approximately 1 in 20,000 people.

-It causes low phosphate levels, leading to bone deformities, growth delays, and dental issues.

-XLH impacts both children and adults, often requiring lifelong management.

-Early diagnosis and treatment can improve quality of life and reduce complications.

This Rare Disease Month, let’s raise awareness, support families, and advocate for better care for those living with XLH and other rare diseases.