Rare Disease Day 2019: Bridging Health and Social Care

Friday, March 8, 2019

Rare Disease Day is held on the last day of February each year. This year, the CPI joined the worldwide community to raise awareness of rare diseases by holding a public lecture at the John Curtin School of Medical Research.

A rare disease is a life-threatening or chronically debilitating disease or condition which is uncommon in the general population. It is estimated that 6 – 8% of Australians are affected by rare diseases. Worldwide, 6,000 to 8,000 rare diseases have so far been identified. Researchers at the Centre for Personalised immunology, we work on identifying new, rare immune diseases and continue research on diseases already described.

1 in 20 people will live with a rare disease at some point in their life. At the CPI, our researchers are investigating some of these rare diseases, including a range of Immune Deficiency, Autoimmune and Autoinflammatory diseases. Patient organisations in over 80 countries hold events in support of Rare Disease Day to raise awareness about rare diseases and their impact on patients' lives. Australia also recognises this important day with many events occurring in and around this date.

Last week, the CPI hosted a public lecture public lecture which brought together guest speakers from The John Curtin School of Medical Research, the ANU Medical School and the ANU Research School of Population Health, with diverse topics explored over the topic 2019 “bridging health and social care”. Professor Cook, A/Professor Phillips and Dr Bourke will share their work and discoveries focusing on the clinical, care and policy aspects of rare diseases.

You can listen to the lecture online, please follow this link: http://bit.ly/RareDiseaseDay2019