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

Page created: 07/04/2015
Page last updated: 07/04/2015
 
 
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases