About the Office

Empower  Connect  Strengthen 

The Office for Rare Conditions is working to put the patient to the forefront, providing information and support to all affected by rare and undiagnosed conditions.

The Office for Rare Conditions wants to empower patients and families to be able to take responsibility for their own health and well being and to support self-management in rare conditions.

To help us achieve this the Office provides patients with information, signposts to appropriate resources and other organisations and connects people with rare conditions to each other. We want to help develop a strong network of patient support organisations, to be a strong voice together. Working with health care professionals, the Office assists clinical services to provide information events for patients and families and education events for professionals.