Skip to main content

What is the real cost of your rare disease?

Managing diagnosed and undiagnosed rare conditions can be stressful and costly, for both families and the NHS. Although some rare conditions are managed through coordinated services (e.g. through multidisciplinary clinics or through a care coordinator), most conditions are not managed in this way.

We’re carrying out a small study to look at the value of coordinating health care services for patients with rare and undiagnosed conditions. The study will identify and explore ways to measure different types of costs and benefits – to patients, family members and the NHS.

Currently, we are looking for patients or family members to test a ‘patient diary’ over a short period of time. Participants will be asked to record in the diary the different costs they face such as the time they spend coordinating their care each week, or the money they spend on travelling to medical appointments. We want to get feedback from patients and families to improve the patient diary, so that it can be used in future research projects.

If you would like to take part in this research or would like to ask further questions, please contact: Amy Simpsoncreate new email/ 0207 704 3141 or Dr Amy Huntercreate new email Please contact one of the research team if you would like this information in a different format or in the Welsh language.

Join our alliance of 200+ SUPPORT ORGANISATIONS AND charities