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Aprile 2015

Partnership with Rare Voices Australia


Participants at the RVA Rare Disease Summit 2015

EURORDIS has signed a memorandum of understanding to enter into a partnership with Rare Voices Australia (RVA). RVA was established in 2012 with a vision to be the unified voice of all people living with a rare disease in Australia.

EURORDIS and RVA recognise that rare diseases are a global public health challenge. Together they want to raise awareness of the common issues that people living with a rare disease and their families face irrespective of where they live in the world.

This partnership symbolises a continued effort to stress the international dimension of the rare disease movement and the global benefits to be gained from collaboration in this field.

RVA and EURORDIS have agreed that the following are key common objectives:

  • To strengthen the common international voice of people living with a rare disease and address rare diseases as a global challenge. This will be done through collaboration on initiatives such as Rare Disease Day (RVA coordinates Rare Disease Day in Australia as a EURORDIS official partner) and through RVA’s participation in the development of the Rare Diseases International initiative, which will be launched at the end of May in Madrid in conjunction with the 2015 EURORDIS Membership Meeting.
  • To address the major expectations that patient communities in Australia and the EU have in common including to: promote rare disease research policy; to enable earlier and better diagnosis of diseases; to promote the development and availability of safe and effective orphan medicinal products and treatments; to provide methods for improving patients’ quality of life; and to provide easier and wider access to quality information on rare diseases.
  • To support the development of an Australian national strategy or plan for rare diseases, the topic of the recent successful RVA Rare Disease Summit . All Summit attendees expressed their support for key principles and objectives for the progression of a national plan.

Eva Bearryman, Junior Communications Manager, EURORDIS