The National Immunodeficiency Strategy’s Mission is to improve the health and wellbeing of people with PIDs (primary immunodeficiencies) and minimise the burden on individuals, carers, health services and community.
The National Immunodeficiency Strategy’s goals are to:
- Enable early and appropriate diagnosis of severe PIDs, including newborn screening of the population for severe combined immunodeficiency (SCID).
- Enable expert centres to provide genomic diagnosis for all patients with a family history of PIDs, or for patients (adults and children) recently diagnosed with PIDs.
- Improve access to appropriate medical and nursing specialist care and training for patients with PIDs, including hereditary angioedema (HAE).
- Improve access to comprehensive multidisciplinary care, including dietitians, physiotherapists and occupational therapists for patients with PIDs.
- Recognise complexity of care required for PIDs in hospital care priorities, funding models, e-health and coding.
- Recognise the need for supporting more clinical research into PIDs.
- Develop and promote education and training resources about PIDs for patients, carers and health professionals.
- Develop and promote collaborations between clinical immunology specialists and nurses, with other health professionals and collaborators, including the TAPID (Transplantation and PID) project.
- Ensure sufficient supply of treatments for patients with PIDs.
- Ensure appropriately supported and funded choices of treatments for patients with PIDs, including subcutaneous or intravenous immunoglobulin replacement therapy (SCIG or IVIG) and HAE treatments.
Content created March 2019