Community and online resources
Find your XLH community and online resources
Although XLH is a rare disease, you are not alone. There are communities of people, including families and medical professionals, that are helping people with this condition. There are patient support and advocacy organizations that provide useful information and resources to the XLH community. You can learn more about these communities and resources below.
Kyowa Kirin is a proud sponsor of The XLH Network, NORD, and their goals.
The XLH Network
The XLH Network, a 501(c)(3) nonprofit organization, seeks to connect people around the world who are affected by or interested in learning more about XLH. The XLH Network connects affected individuals, families, and medical professionals.Visit website
National Organization for Rare Disorders (NORD)
NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.Visit website
Global Genes is a rare disease patient advocacy organization that works to build awareness, educate the global community, and provide connections and resources.Visit website
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