FrançaisFind 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 healthcare 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. 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.
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 healthcare professionals.
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.
National Organization for Rare Disorders (NORD)
NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.
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).
RareConnect
RareConnect.org is a safe, easy-to-use platform where rare disease patients, families, and patient organizations can develop online communities and conversations across continents and languages.
Global Genes
Global Genes is a rare disease patient advocacy organization that works to build awareness, educate the global community, and provide connections and resources.
Genetics and Rare Diseases (GARD) Information Center
GARD maintains a list of rare diseases and related terms to help people find reliable information.
Want a refresher? Take the next step:
Are you connecting the symptoms?
Learn about the signs and symptoms of this rare condition and how to get a diagnosis.
Get a diagnosis
Learn how XLH can be diagnosed early.
Set goals for XLH management
Learn about XLH management goals and options.