As you may be aware, the House of Representatives Standing Committee on Health, Aged Care and Sport (the Committee), Chaired by Trent Zimmermann MP and Dr Mike Freelander MP, has commenced a Parliamentary Inquiry into new drugs and novel medical technologies. The inquiry will include a particular focus on access to the treatment of rare diseases and conditions where there is high and unmet clinical need. The Committee is inviting organisations and individuals to make a submission addressing the terms of reference by Tuesday, 13 October 2020.
Guided by the National Strategic Action Plan for Rare Diseases (the Action Plan), Rare Voices Australia (RVA) has put together a suite of support materials to highlight the recommendations that have strong support for implementation in relation to the Terms of Reference (TOR) of the inquiry. We’ve included a guide for each TOR to highlight some of the common issues for the rare disease community – this is not an exhaustive list. These guides include excerpts from the Action Plan that cover recommendations in relation to the relevant TOR. Click here to access the guide for each TOR.
RVA Partners are encouraged to reach out to Louise Healy, RVA’s Stakeholder Engagement and Education Officer for support on 0455 053 877 or via email: [email protected]