Through this research we hope to gain a better understanding of the burden of XLH for patients and their families – particularly the burdens that are in addition to physical symptoms that impact all aspects of life and how XLH affects your quality of life, mental health, relationships, access to knowledgeable care providers, and finances. The knowledge and collective experiences learned from this research may be used to help families impacted by XLH through advocacy, discussions on healthcare policies, policy, education, and awareness activities.

If you are interested in learning more or participating, click here.  At the screen, please check the box that says “Check if you have no code” to proceed to the survey.