A Word from Rare Voices Australia

Posted on Sunday, 25 August 2019

Summary of article released by Nicole Millis, Chief Executive Officer, Rare Voices Australia

(MGAQ partner with Rare Voices Australia)

A lot can happen in a month! The Australian Government has committed to a National Rare Disease Framework.  While opening our recent National Rare Disease Summit, Minister Hunt announced the Government’s commitment to a National Rare Disease Framework, the development of which is to be led by RVA. It is a truly amazing and momentous policy decision. Since taking over the Health portfolio, Minister Hunt has certainly been a champion for rare disease in the areas of access to rare disease treatments including the Life Saving Drugs Program Reform, the Medical Research Future Fund’s rare cancers and rare diseases calls, investment in genomic medicine, the endorsement of National Newborn Bloodspot Screening Guidelines and more. While at RVA, we say that such effective rare disease policy transforms patients’ lives, Minister Hunt’s commitment now to a National Rare Disease Framework is his real legacy - a commitment to prioritising Fair for Rare now and in the future.

With the Government’s support of a National Rare Disease Framework, we have the best opportunity ever to make a lasting difference to the rare disease community, now and in the future. We can all now be part of something bigger and contribute to the detailed development of our country’s National Rare Disease Framework. RVA wants to engage and collaborate and build on our work to date.  We will travel around the country holding a range of consultations, some open and some targeted, to put together a quality Framework report with effective recommendations. More information will be shared soon.

Full article is in this newsletter.