Find Your XLH Community and Online Resources
Although XLH is a rare disease, there are a number of communities that are available to you. These are communities of people, including families and medical professionals, that are helping people with this condition. You can also access patient support and advocacy organizations that provide useful information and resources to the XLH community. Find some of these communities and resources below.
The Canadian XLH Network
The Canadian XLH Network is a non-profit organization that aims to connect Canadians with XLH and promote XLH awareness in Canada.Visit website >
The XLH Network
The XLH Network, a 501(c)(3) non-profit 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 >
Canadian Organization for Rare Disorders (CORD)
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.Visit website >