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Australia’s inaugural conference to break down barriers for Duchenne muscular dystrophy

September 7, 2017 Conferences No Comments Email Email

For the first time in Australia, a high-level conference to break down barriers for Australians with Duchenne muscular dystrophy will be staged in Sydney.

The Duchenne ACTT Now Conference, which will be hosted by Save Our Sons Duchenne Foundation, will address advocacy, clinical care, trials and therapies.  Close to 100 delegates including leading clinicians from across the globe, Australian government representatives, researchers and international pharmaceutical companies, will gather for two days at Sydney Olympic Park onSeptember 13 and 14.

World renowned neurologist Professor Brenda Wong from Cincinnati Children’s Hospital will outline her experience in caring for children with Duchenne, and Professor John Jeffries, also from Cincinnati Children’s Hospital, and Associate Professor Kan Hor from Nationwide Children’s Hospital will speak about the latest in cardiac care for those with Duchenne.

Affecting one in 3500 newborn boys (and girls in rare cases), Duchenne is a progressive condition which eventually affects all voluntary muscles and involves the heart and breathing muscles in its later stages. Approximately 30 boys are diagnosed with Duchenne annually in Australia, and between 600 and 900 Australian families currently live with the condition. Children diagnosed with Duchenne typically require a wheelchair by their early-teens and sadly, most do not live past their twenties.

The Conference comes at an exciting but often confusing and frustrating time for the Duchenne community.

Save Our Sons Duchenne Foundation Founder, Elie Eid said: “We are excited to be hosting this event and look forward to seeing the outcomes make a positive change in the lives of those living with Duchenne in Australia. There is no time to waste, we need new treatments and the best care for everybody in every corner of our country.”

The aim is for the industry to work together to resolve issues that are pertinent across Australia including improving clinical trial capacity, clinical care standards and access to emerging therapies.

Save Our Sons’ Research Affairs Manager, Dr Kristina Elvidge said: “The landscape for Duchenne is changing, with many clinical trials starting and two new drugs gaining regulatory approval overseas. However, Australia is lagging behind, with only a handful of clinical trials compared to the 50 listed in the USA, and no therapies approved for sale here. This Conference is vital to improve access for Australian families, not only to new therapies but the best possible care.”

Presentations on the latest research will be a key feature of the Conference but the organisers also want the meeting to be interactive and will facilitate ‘Round Table’ sessions where clinicians, researchers, and industry experts will work together to improve care standards, increase clinical trial activity and access to new therapies in Australia.

Nursing and allied health professionals will also participate in workshops to share their experiences and problem- solve together.

“Australia has some of the world’s leading clinicians, researchers and scientists, who have dedicated their careers to caring for the Duchenne community or developing therapies for this insidious disease,” said Klair Bayley, Executive Officer, Clinical Care and Advocacy.   “Our Conference will highlight Australia’s strengths, the regulatory processes and clinical trial environment, and will allow the discussions around how we harness our strengths and move forward collaboratively for the best outcome for all Australians whose lives are affected by Duchenne.

“Because, for the Duchenne community, The Time To ‘ACTT’ Is Now,” Klair added.

Save Our Sons, the peak body for Duchenne in Australia is committed to fundraising for research to find a cure for Duchenne, enhancing the quality of life for Duchenne-affected families and raising awareness of their plight.

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