Resources
for XLH

RESOURCES FOR XLH PATIENTS

We want to help you find answers.

Doctor Database

Find or refer a medical professional with XLH expertise.

transition Toolkit

Get the Transition Toolkit for tips about changing from pediatric to adult care.

RARE DISEASE ALERT CARD

Download the Rare Disease Alert card to give to your medical professionals.

LEARN ABOUT ONGOING XLH CLINICAL STUDIES

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.

For on going clinical trials visit: clinicaltrials.gov

The NIH website offers some good questions to consider while deciding whether to enroll in a clinical trial.

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.

RESOURCES FOR MEDICAL PROFESSIONALS

FOR PHYSICIANS

Learn about diagnosing and
treating XLH.

VOICE OF THE PATIENT

FOR DENTISTS

View our recommendations for managing
dental health in XLH-affected patients.

DENTAL BROCHURE

Get past the medical jargon and meet real people living with XLH in WEAK BONES, STRONG WILLS: THE STORIES OF XLH

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OTHER RESOURCES

The XLH Network has not attempted to provide a complete collection of research on XLH; instead our goal is to provide a reasonable cross-section. Check back frequently as we will add new information as it becomes available.