The XLH Network
A 501(c)(3) nonprofit that connects people around the world affected by or interested in XLH, including patients, families, and healthcare professionals.
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National Organization for Rare Disorders (NORD)
A patient advocacy group dedicated to individuals with rare diseases and the organizations that serve them.
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Global Genes
A rare disease patient advocacy organization that raises awareness, educates, and connects people globally to resources and support.
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Got Transition
A national resource center that helps children and young adults switch from pediatric to adult healthcare.
Visit websiteThis is a curated list and is not meant to be an exhaustive list of all organizations, services, or online resources. These resources are created by and hosted on third party websites that are not reviewed, controlled, or endorsed by Kyowa Kirin, Inc.
COMM-US-RDS-1002 August 2026