Increasing rare disease research innovation and capacity

As we approach the annual Rare Disease Day on 28 February, we  recognise the exceptional contributions of the researchers and clinicians within our Luminesce Alliance community. While it is impossible to list everyone, we would like to highlight a few of the outstanding individuals, including Prof Adam Jaffe, Dr Emma Palmer, A/Prof Mark Cowley, A/Prof Wendy Gold, Prof Claire Wakefield, Dr Kate Hetherington and Dr Michelle Lorentzos.

Along with Luminesce Alliance support and patient advocates including Kris Pierce and Emma Maly, these outstanding researchers and clinicians are increasing capacity for rare disease research, innovation and equitable access to health system support for children with rare diseases and their families.

Their contributions, and upcoming Rare Disease Day events, are increasingly significant for the more than 400,000 Australian children with rare diseases, given approximately 95% of 7000 known rare diseases have no treatment and are not studied by medical researchers.

• Read more about how we are progressing rare disease research, our patient advocates and our researchers’ significant contributions
• Participate in Rare Disease NSW events