The XLH Community

Becky, living with XLH

You may have a rare disease but you are not alone. There are communities of people, including families and medical professionals, all helping those with XLH. You can learn more about these communities below.

—Gini, XLH patient


CORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. The site also includes guidance about building an advocacy group or becoming a rare disease advocate.

National Organization for Rare Disorders, NORD, is an organization dedicated to providing resources about rare diseases.

Le Regroupement Québécois des Maladies Orphelines (RQMO)

RQMO is a group of associations dedicated to rare diseases and individuals affected by them (this site is in French).

Global Genes

Global Genes is a rare disease patient advocacy organization that works to build awareness, educate the global community and provide connection and resources.

The XLH Network

The XLH Network seeks to connect people around the world who are affected by or are interested in learning more about XLH. The XLH Network connects affected families, individuals and medical professionals.

Connect with The XLH Network