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We want to hear from you.
Please think about your experiences of diagnosis, treatment and care and complete our short survey when it is open. This should only take about 10 minutes. When the survey is open you can either complete it online or we can send you a paper copy. If you need a paper copy please contact us.
If your charity or organisation serves adults who are affected by Osteogenesis Imperfecta, Fibrous Dysplasia or X-Linked Hypophosphataemia (including patients, family members, friends or professionals) we hope that you will sign up to become a supporting partner of the Rare Musculoskeletal Disorders in Adulthood PSP. You can do this by contacting us. The role of the supporting partner is to help publicise the initiative with their members encouraging completion of the survey. It may also result in the opportunity to help define the final Top 10 priorities.
0300 304 7777
John Radcliffe Hospital
Nuffield Orthopaedic Centre
Horton General Hospital