Our mission

Our mission is to support and represent people affected by primary immunodeficiencies (PIDs) in the UK, working with healthcare professionals and other relevant organisations to improve their care and quality of life.

Our aims are:

  • to be the first port of call for those in the UK seeking information on all aspects of having a PID
  • to promote awareness and understanding of PIDs
  • to provide direct support to individuals and families affected by PIDs
  • to be an advocate and campaigner for the needs and rights of people affected by PIDs.

We will achieve this by:

  • providing comprehensive and clearly written information on PIDs and associated issues that is easily accessible through a variety of media
  • raising awareness and understanding of PIDs within the medical profession in order to facilitate¬†earlier and accurate diagnosis, better monitoring and care, and so extend and improve quality of life
  • listening to, responding to and prioritising patient needs, and working actively to make their voice heard through liaison with individuals, families, our patient representative panel, professionals and members of our medical advisory panel
  • clear signposting to condition-specific support groups, where they exist, and working with them to ensure better healthcare for all affected by PIDs
  • building a solid membership database of those affected by PIDs and those involved in their care as a basis for our communication, consultation and lobbying activities
  • connecting people affected by the same condition to share experiences and provide mutual support by helping them establish their own support groups
  • working with others to lobby for improved patient care and continued medical research into PIDs
  • raising funds to support PID UK in its work to help affected individuals and families wherever they live in the UK.