Community. Education. Advocacy. Compassion.
A NON-PROFIT WORLDWIDE PATIENT SUPPORT ORGANIZATION FOR PEOPLE LIVING WITH X-LINKED HYPOPHOSPHATEMIA (XLH).
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💜🩵 It’s International XLH Awareness Day!
#XLHAwareness #XLHStrong #XLHN💙 October 23 – International XLH Awareness Day 💙
X-linked hypophosphatemia (XLH) is a rare disease that poses daily challenges for those affected and their families.
🔵 Treatments change lives: Appropriate therapies improve quality of life and enable those affected to lead more active, self-determined lives.
🔵 Access is crucial: Medical advances only make a difference if all patients worldwide have fair and prompt access to diagnoses and treatments.
🔵 Why awareness is so important: Rare diseases like XLH rarely get the spotlight. Through global awareness efforts, we build understanding, shorten long diagnostic journeys, and give the XLH community a strong voice!
🧬✨Together, we’re raising awareness about XLH! 👥💙
#XLHAwarenessDay #RareDiseaseAwareness #XLH #TogetherForRare
EVERY SMILE MATTERS!
The clock is ticking on the Ensuring Lasting Smiles Act (ELSA)!
As we approach the end of 2026 and the close of the 119th Congress, the XLH Network is raising awareness about legislation that could make a meaningful difference for individuals and families affected by XLH.
Why is ELSA important to the XLH community?
For many of us living with X-linked hypophosphatemia (XLH), dental complications are not simply cosmetic concerns. Dental abscesses, infections, tooth loss, and the need for extensive dental treatment can be lifelong challenges associated with our disease.
ELSA seeks to address insurance coverage barriers for medically necessary treatment of congenital anomalies, including certain dental and oral procedures. For families affected by XLH, access to appropriate care can have a significant impact on health and quality of life.
WHY THE URGENCY?
The 119th Congress ends in January 2027. If ELSA is not passed before this Congress concludes, the legislation would need to be reintroduced in the next Congress, restarting the legislative process.
EVERY SMILE MATTERS — OUR COMMUNITY HAS A STORY TO TELL!
Through our Every Smile Matters campaign, we are inviting the XLH community to share personal experiences and participate in the conversation about ELSA.
HERE’S HOW YOU CAN GET INVOLVED:
SHARE OUR VIDEO!
Post our Every Smile Matters campaign video on your social media pages to help others understand the importance of this legislation.
TELL YOUR STORY!
Share how XLH has affected your dental health, your access to treatment, or your family’s financial burden. Personal experiences help others understand the challenges our community faces.
CONTACT CONGRESS!
Learn about ELSA and contact your U.S. Senators and Representative to share your perspective, including whether you would like them to cosponsor the legislation.
MAKE YOUR VOICE HEARD!
Use this link to send a customized email to your members of Congress:
👉 ujoin.co/campaigns/2473/actions/public?action_id=5391
We do not have the rights to this song.
#EverySmileMatters #ELSA #EnsuringLastingSmilesAct #XLHNetwork
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:
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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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