Post-Summit Media Release – Rare Disease Summit

Rare Voices Australia hosted a Rare Disease Summit on Friday 27th and Saturday 28th March 2015 in Melbourne. A National Rare Disease Plan, Driving Collaboration, Driving Action. The Summit was officially opened by Senator Richard Di Natale.

In Senator Richard Di Natale’s opening address to the Summit he urged Rare Voices Australia to continue their advocacy and he praised Rare Voices Australia for its activities and for hosting the Summit.

“You are ensuring that your voices are heard collectively. That you are meeting with all the key stakeholders in this space, and bringing together all the key groups…and it’s only by doing that, that you will
be able to have an impact in your advocacy,” he said. “In terms of Governments and policy-makers listening, you must be organised, and that’s what you’re doing.”

“It’s a lottery, if you happen to have a disease that’s a national health priority, you’ll find that there are protocols, access to treatment is a lot easier and so on. If you’re one of the hundreds of thousands of
Australians living with a rare disease then you face a constant uphill struggle. “We’ve just got to fix that.”

“We’ve got to make sure rare diseases are recognised as a priority. We’ve got to make sure that people get access to the best available treatment,” according to Senator Di Natale. “We’ve got to fix or improve, what is generally a good system when it comes to providing people with access to new drugs, but we’ve got to improve it and make it easier for people who are diagnosed with one of these rare conditions.”

“It’s no longer acceptable that somebody who is unlucky enough to be born with a rare disease has to fight every step of the way…. to get diagnosed and access to the treatment we know works,” Senator Di Natale said.

Rare Voices Australia Executive Director Megan Fookes says: “The Rare Disease Summit brought together over 120 delegates from across the country as well as representation from New Zealand, Switzerland,
United Kingdom and Singapore. The two day summit allowed 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 bipartisan 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.”

The Summit attendees unanimously agreed that a National Plan for rare disease needs to be adopted by the Australian Government. A draft Communique outlining the key Principles and Objectives for a National
Plan was proposed for endorsement and RVA is receiving formal endorsement from many organisations from around the country asking for Australia to please listen.

“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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