Pre-Summit Media Release – Rare Disease Summit

A National Rare Disease Plan, Driving Collaboration, Driving Action, will be opened by Senator Richard Di Natale; one of many Parliamentary Friends of Rare Diseases.

Rare Voices Australia is a National Organisation set up to give a unified voice to those living with rare diseases. Rare Voices Australia Executive Director Megan Fookes says: “The Rare Disease Summit allows participants to join the conversation and bring consolidated input to the dialogue driving A National Plan for Rare Diseases. RVA is encouraged to see many voices now working together Driving Collaboration and Driving Action. RVA is calling for the Federal Government to adopt a National approach to rare diseases”.

“In Australia there is no rare disease policy and there is no National strategy or plan. How can we ignore our most vulnerable and sick who have simply been born with these rare conditions? RVA has received bi-partisan support in Federal Parliament but we are waiting for the Government to endorse and support a National Rare Disease Plan” Ms Fookes said. “There is much at stake. We need a rare disease policy from our Government to help people suffering from rare diseases gain access to co-ordinated care, services and treatments which can extend and improve their quality of life.”

In 2009, the European Commission made a formal recommendation for countries to adopt a National Rare Disease Plan by the end of 2013. The UK Government responded by introducing its National Plan for rare diseases in November 2013. Australia needs a plan.

The Summit is very action focused bringing together key stakeholders and opinion leaders to collaborate on a report to continue to press for a National Rare Disease Plan for Australians . There is an excellent line up of speakers national and international speakers giving varied perspectives on a range of topics concerning rare diseases.

Day 2 will be officially opened by Dr Thomas Lönngren, former Executive Director of the European Medicines Agency, EMA (Jan 01-Dec 10) and who also served with the Swedish Board of Health and Welfare as Director of Operations (1978-93). He will talk about the need to adopt key principles for a co-ordinated approach to managing rare diseases as a key health priority.

“People living with a rare disease deserve the same level of quality care and access to treatments as patients with common conditions,” Ms Fookes said. “People living with a rare disease need better support and coordination of care. A national co-ordinated approach which provides equitable access to diagnosis, care and quality services in the area of rare disease is long overdue.”


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