Resources
A family living with XLH
A family living with XLH
Being affected with a rare disease or being a parent or caregiver of a child with a rare disease can be daunting and life-changing. Equipping yourself with knowledge and information is a great first step towards managing the symptoms of XLH. Here are some more educational resources to help support you.
The Canadian XLH netowork is a non-profit organization that aims to connect Canadians with XLH and promote XLH awareness in Canada.
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.
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.
RQMO is a group of associations dedicated to rare diseases and individuals affected by them (this site is in French).
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 is a rare disease patient advocacy organization that works to build awareness, educate the global community, and provide connection and resources.
GARD maintains a list of rare diseases and related terms to help people find reliable information.
Learn about the basics of XLH by downloading this resource
“I can’t control the symptoms of my XLH, but I can control my attitude.”
“You just have to check-in with your own body…I think the point should be to have a good life.”
“Each we day we have to do a lot of things but XLH has made us stronger, better people.”
Learn about the role of phosphate in the body
“Living with XLH is a silent pain.”