Get Involved



The XLH Network is committed to building a strong community for those living with XLH.  Our vision for this community is that it is a strong voice in our advocacy efforts.

Advocating for Families Living with XLH:

Advocacy is about helping people find their voice to make a change.  The power of advocacy is that many voices are louder than just one.

How to Advocate:

  • Volunteer as an XLH Awareness Day Ambassador for your state.
  • Participate in Virtual XLH Awareness Day on Capitol Hill June 6, 2024. (see event page for details)
  • Reach out to your senators/congresspeople.
  • Send an email or letter – tell your story briefly and ask for their support with specific pieces of legislation or issues and how it can help the rare disease community.
  • Tell Your Story to legislators, news outlets, philanthropic institutions, etc.
      • Briefly explain XLH.
      • Focus on struggles you have encountered related to your reason for advocating.
      • Tell about why there needs to be change and ask for support.

Our NEW Advocacy Training Series starts February 7th. Held quarterly, this series will teach the basics of Advocacy, how to raise awareness, and how to tell your story. See more and register on our event page!


Ensuring Lasting Smiles Act

The Ensuring Lasting Smiles Act (ELSA) would require all private insurance group and individual health care plans to cover medically necessary services resulting from congenital abnormalities. That coverage would include services and procedures for any missing or abnormal body part necessary to achieve normal body function, including teeth.

You can help by downloading this letter to use as a template for sending to your U.S. Senator and Congressperson.



Become a member of the XLH Network today.

Membership is open to:

  • Those living with XLH, ADHR, TIO or ARHR.
  • Family members and friends of those living with XLH, ADHR, TIO, or ARHR
  • Medical professionals with an interest in phosphate wasting disorders.

To become a member, click here.


The XLH Network is the main hub of connection and support for those living with XLH. We offer resources to help you and your family deal with issues that come up during diagnosis, treatment, and disease management, including:   

  • Opportunities to join the XLH community, both virtually and in-person, where you can connect with others around the world dealing with the same issues.
  • Help finding qualified specialists and medical professionals near you through our doctor database
  • Priority notifications regarding events, research projects, and other opportunities.
  • Access to our Quarterly Newsletter
  • Building our membership also helps the scientific community fight XLH by encouraging research and clinical trials.


80% of all donations go towards programs that provide education, outreach and advocacy for families living with XLH.

The XLH Network, Inc. is a not-for-profit corporation and is recognized in the USA as a tax-exempt 501(c)(3) publicly supported charitable organization.

Disclosure: The registration filed by this organization and a description of our programs and activities may be obtained by contacting us at The XLH Network, Inc., 911 Central Ave., #161, Albany, NY 12206 or by calling 518-350-9541. You may also obtain information upon request from the Attorney General Charities Bureau, 102 Broadway, New York, NY 10271. For specific states you may obtain financial information directly from the state agency.

Click here to see the list of states where this applies.

Contact Us

The XLH Network, Inc.
911 Central Ave., #161
Albany, NY 12206



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Please let us know what's on your mind. Have a question for us? Ask away.

XLH Network

A Worldwide Patient Support Organization for People Living and Dealing with X-Linked Hypophosphatemia (XLH)

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