Get involved - how you can help

Patients, carers and health and social care professionals

If you:

• Have or are caring for and adult with Osteogenesis Imperfecta, Fibrous Dysplasia or X-Linked Hypophosphataemia
• Work as a health or social care professional for adults with Osteogenesis Imperfecta, Fibrous Dysplasia or X-Linked Hypophosphataemia

We want to hear from you.

Please think about your experiences of diagnosis, treatment and care and then complete our short survey using the link below. This should only take about 10 minutes.

• Link to Survey

If you would like a paper copy of the survey please use the link below:

• I would like a paper copy (contact us details)

Charities and organisations

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.