Ultragenyx Pharmaceutical, Inc. is sponsoring a research study to better understand how XLH impacts the lives of affected children and adults. The study consists of an online survey that asks questions about your experience with XLH, including how it was diagnosed, what symptoms and complications you (or your child) have experienced, how the disease has been managed and how these events affect your daily life. Anyone interested in participating can follow the link below to learn more about the study.
Burden of illness study
The XLH Network, Inc. does not endorse or critique specific research, and does not counsel individual patients either for or against participation in any specific research project. Prospective volunteers should always carefully review the project's informed consent documentation and protocol, and discuss the pros and cons of their participation with trusted advisors, including their health care providers and family members.