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JA’s 100km walk for Rare Voices Australia: Federal Government commits $55 million for clinical trials of rare disease treatments

John Alexander OAM MP was joined on the second last day of his 100km Bennelong Walk for Rare Voices Australia (RVA) by Federal Health Minister The Hon. Greg Hunt MP and RVA CEO Nicole Millis.

(L-R): S. Bruce Dowton Vice Chancellor Macquarie University, Hon Greg Hunt MP Federal Health Minister, Rare Voices Australia CEO Nicole Minnis, JA
Health Minister Hunt and rare Voices Aus CEO Millis join JA on 100km walk for charity

I was hosted by Macquarie University today and joined by Federal Health Minister Hon Greg Hunt MP and @Rare Voices Australia CEO Nicole Millis where we talked about the importance of supporting those on the lonely road of living with a rare disease.

Posted by John Alexander on Wednesday, November 20, 2019
Watch the video of JA with Health Minister Hunt and RVA CEO Nicole Minnis

Minister Hunt announced that Australians suffering from debilitating rare cancers and diseases will experience new hope, thanks to the largest investment in clinical trials in any single round in Australian history.

Through its landmark Medical Research Future Fund, the Morrison Government is investing $55 million to research rare cancers and diseases.

Mr Alexander said: “It is brilliant to see this new investment in clinical trials from the Morrison Government. This money will go a long way towards improving, and potentially saving, the lives of those living with a rare cancer or disease.”

Ms Millis said: “It’s wonderful to see this continued investment in clinical trials for rare diseases and rare cancers. We need investment into all types of rare disease research. This is what we have been advocating for, for a long time. Hopefully through this funding, and further funding in the future, will we be able to make real progress towards improving the lives of those living with a rare disease. Rare diseases are common in our community, they affect more people than even diabetes. People living with a rare disease face significant challenges including diagnostic delays, lack of available treatments, and difficulty in finding the appropriate care.” 

Mr Hunt said: “Rare Voices Australia plays an incredibly important role in raising awareness and supporting individuals living with rare illnesses. I honour Nicole for her dedication and tireless work in striving to deliver a healthier Australia, and I congratulate John on his tremendous support.”

Under the round, the Government is inviting Australia’s best and brightest researchers to apply for grant opportunities. The unprecedented clinical trials activity is aimed at developing new drugs, devices and treatments, and ultimately saving lives.

Of the $55 million:

·         $5 million is for Childhood Brain Cancer clinical trials, with an aim to double the 10-year survival rate of childhood brain cancer, improve the quality of life of children living with brain cancer, and ultimately find a cure to defeat childhood brain cancer.

·         $20 million will address an increasingly significant burden of neurological disorders including Duchenne Muscular Dystrophy, spinal cord injuries and Autism Spectrum Disorders.

·         $15 million is for research into reproductive cancers, including cancers located in the cervix, uterus, fallopian tubes, endometrium or ovaries in women, and cancer of the testicles in men.

·         $15 million will address other significant gaps in current research and/or knowledge in rare cancers, rare diseases and areas of unmet medical need.