MPS-foreningen

MPS-foreningen i Norge is an association focused on mucopolysaccharidosis (MPS), a group of rare diseases. Its work aims to increase knowledge and awareness of MPS and help people who are newly diagnosed, along with their families and carers, find reliable information. The association also seeks to create opportunities for people affected by MPS and their families to meet, often in collaboration with Frambu, a centre for rare disorders.

The association’s website provides information about MPS, including the conditions, symptoms, complications, progression, medical follow-up and treatment. It also shares information about MPS in Norway and research, alongside useful links. Personal stories from people living with MPS offer insight into the varied experiences of the condition, while a question-and-answer feature includes input from a specialist in paediatrics and senior physician at Frambu. People can contact the association by phone or email for questions or further information. Through these resources and community-building efforts, MPS-foreningen supports individuals and families seeking guidance and connection.