Welcome to BEYONDXLH

BEYONDXLH is an online disease-monitoring program for patients with X-linked hypophosphatemia (XLH) and other chronic hypophosphatemic disorders.

The study is a collaborative research effort among industry (Ultragenyx Pharmaceutical, Inc.), academia (Yale University), and a patient-advocacy group (The XLH Network, Inc.) to characterize XLH and other chronic hypophosphatemic disorders from the patient perspective via a user-friendly mobile application.

Why should I sign up?

Every patient counts. Every answer counts. With enough patient participation in BEYONDXLH, we can meet the goals described below.


For You & Your Doctor

Promote long-term engagement of patients and Healthcare Providers (HCPs). Aid efforts to educate newly diagnosed patients and their families.

For Treatment Development

Evaluate long-term progression of the disorder. Increase understanding of hypophosphatemic disorders (including XLH) and contribute to the development of new tools and products.

For Regulators & Payers

Provide real-world data on health care resources and how they are used.

Program Details

What to Expect

Participation and Data Security

Getting Started