Sweden – Sverige
The Swedish XLH Association, founded in 2003
The purpose of the association is:
- Creating community for members and providing advice and support. This is done through annual meetings and by telephone / email contact.
- To support each member so that proper care is provided.
- To spread knowledge about XLH.
- To monitor and influence XLH’s interests in society.
- To contribute to an increase in competence and development, for the treatment of XLH disease.
- The association is a member of the Riksförbundet rare diagnoses.
- XLH Swedish Patient Association contributes to the building of a network for rare diagnoses at the University Hospitals.