Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
Thousands of rare and ultra-rare disorders exist. Some are so rare that they don’t even have a syndromic name attached to them. While individually uncommon, these rare diseases, including cancers, affect around 400,000 Australian children, with many requiring lifetime care.
The fact that there are often no existing effective cures adds to the high level of pain and suffering endured by patients and their families. The impacts on the health and quality of life for these children, as well for their families and the health system as a whole are significant.
Find out more about Rare Disease Day 2021 and the official video here.
Rare Disease Day in Australia events can be found here.
Find out more about how Luminesce Alliance is contributing to rare diseases research, development, trialing and implementation of new novel therapies and medical technologies in the paediatric setting by reading patient case studies in our recent Parliamentary Inquiry Submission here.
The Newborn Screening Program team has published their findings on the perspective of parents and healthcare professional on the newborn screening program for spinal muscular atrophy.
“We needed this”: perspectives of parents and healthcare professionals involved in a pilot newborn screening program for spinal muscular atrophy” surveyed both parents and healthcare professionals to gain their perspective and an understanding of the psychological impact of the screening program from diagnosis to treatment. Download the journal article here .
The Australian Government has announced a substantial expansion of the Rapid Applied Research Translation (RART) Initiative Round 3, offering grants totalling $55 million over three years.
For the 2021-2022 round, $11 million is allocated to Stream 1: Organisations based in urban areas (any area according to the Monash Modified Model Locator) for which Luminesce Alliance application is eligible. Luminesce Alliance will be managing expressions of interest (EoI) for this grant opportunity on behalf of our Partners.
For more information on the Luminesce Alliance EoI process, refer to the Luminesce Alliance Guidelines here. Further details regarding the MRFF RART Guide Guidelines can be found here.
Only projects with a focus in paediatrics and in particular precision medicine/health will be considered as part of this EoI.
Submission of EoIs
- EoIs have just opened and will close Wednesday 24 February 5pm AEST.
- If you are interested in putting forward an application, please complete the Luminesce Alliance EoI Application Form, here.
- One successful application, with the support of Luminesce Alliance, will then progress to the full application for the MRFF RART Round 3 application that opens on 4 March and closes 6 May.
- Enquiries regarding the Luminesce Alliance EoI process can be directed to: firstname.lastname@example.org