What We Do

The Office carries out many varied activities.

Below are some examples of the type of work we are involved in:

  • Meeting and talking with patients, parents and carers about their everyday experiences of living with a rare condition, signposting to resources, services and support organisations.
  • Working with health care professionals to organise information events, patient and family support meetings and develop patient and education resources.
  • Liaising and networking with patient support organisations, encouraging their participation in patient related activities.
  • Promoting research, staying up to date with the latest clinical trials and providing information on what is new.
  • Assisting clinical services with the development of databases for children and young people with rare conditions.
  • Representing  patients and families affected by rare conditions on working parties which meet to discuss the implementation of legislation for people with rare conditions and access to new medicines for rare conditions.