We want to help you find answers.
Resources for XLH patients
- Enroll in BEYONDXLH, an online disease monitoring program for patients with X-linked hypophosphatemia (XLH) and other chronic hypophosphatemic disorders.
- Find or refer a medical professional with XLH expertise.
Get the Transition Tookit for tips about changing from pediatric to adult care.
Learn about ongoing XLH clinical studies through:
- Ultragenyx, Quinnipac University, and Shriner’s Hospital for Children.
- Learn about ongoing clinical trials.
Dental Resources:
- Share this flyer with your dentist that describes how XLH affects teeth along with guidelines for treatment.
- Download a sample Medical Necessity for Dental Services letter to seek insurance coverage for dental work.
Dental Advocacy:
Ensuring Lasting Smiles Act
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Download the following letters to use as a template for sending to your U.S. Senator and Congressman
Resources for medical professionals:
For Physicians:
Learn about diagnosing and treating XLH.
For Dentists:
View our recommendations for managing dental health in XLH-affected patients.
The XLH Network, Inc. does not endorse or critique specific clinical trials, and does not counsel individual patients either for or against participation in any specific clinical trial. Prospective volunteers should always carefully review the clinical trial's informed consent documentation and protocol, and discuss the pros and cons of their participation with trusted advisers, including their health care providers and family members. The NIH website (clinicaltrials.gov) offers some good questions to consider while deciding whether to enroll in a clinical trial.