We invite you to send a Valentine's Day message from our adorable mascot, Link, to a special member of the XLH Community. Whether it's your best friend, partner, family member, or anyone you appreciate, let them know they are valued! Send your heartfelt (or humorous!) message along with the recipient's name to executivedirector@xlhnetwork.org.

We'll be sharing messages every day until Sunday, February 16th on our Facebook Page and we can also email the message to your recipient. Want to keep it mysterious?Just let us know and we will post your message anonymously. Suggested donation for each shout-out is $14, but any amount is warmly welcomed. Payment can be made via Venmo at @xlhnetwork or above by clicking the "Donate" button. Spread the love and have fun!

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

BUY NOW

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.