Australian academics first called for a national plan for rare diseases in 2010, so it is with great excitement that the National Strategic Action Plan for Rare Diseases (the Action Plan) has been launched. Rare Voices Australia (RVA) has led the collaborative...
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National Strategic Plan for Rare Disease 2020
https://www.rarevoices.org.au/page/167/national-strategic-action-plan-for-rare-diseases https://www.health.gov.au/ministers/the-hon-greg-hunt-mp/media/first-national-action-plan-for-rare-diseasesThe Murdoch Children’s Research Institute’s (MCRI) Rare Diseases Now...
Massimo’s Mission: closing the loop from genetic diagnosis to clinical treatment of leukodystrophies.
https://www.australiangenomics.org.au/massimos-mission-closing-the-loop-from-genetic-diagnosis-to-clinical-treatment-of-leukodystrophies/
Dr Chloe Stutterd, Clinical Geneticist – Victorian Clinical Genetics Service
Massimo’s Leukodystrophy Mission has commenced
https://medicine.unimelb.edu.au/mms/mms-staff-news/newsletter-issue-14-december-2019/massimos-leukodystrophy-mission-has-commenced
Charity Challenge Golf Day @ Woodlands 2019
Dinner for Derek 2019
VIP Photo Booth images + GIF’s + MP4’s and individual photos: https://www.vipphotobooth.com.au/portfolio/dinnerforderek2019/
Charity Golf Challenge Woodlands Victoria – book your spot
Charity Challenge 2019, and IA Foundation presentation @ Long Reef
Ethan and Oliver Hosking
Read the story of Ethan and Oliver Hosking and listen to the radio interview with parents Mark and Jasna Hosking, including Bronwyn Byrne/Leukodystrophy Australia from Radio Adelaide....
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