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.

• We advocate for patients and families affected by rare conditions. We join in working groups that focus on implementing legislation and improving access to new medicines for rare conditions.