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Advocates Event: Making a Big Impact in Rare Disease Research

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Did you know that rare diseases are actually common? There are about 8000 rare diseases affecting an estimated 1.5 million Australians.

Challenges that face those who suffer from a rare disease include the process to diagnosis, treatment options and finding a cure.

For most rare diseases, there is no cure, but there is hope.

Join us for this free Advocates Event where eminent investigators, Associate Professor Robert Henderson and Professor David Coman will speak about the landscape of rare disease research and detail the projects they are working on to give people with rare diseases better treatment options and offer a better quality of life.

  • Associate Professor Robert Henderson is a Visiting Medical Officer at the Wesley Hospital with an interest in neuromuscular diseases and in particular Motor Neurone Disease.  A rare disease, Pompe Disease sometimes overlaps with MND and Dr Henderson has a large group of patients with this disease. This disease is exciting given the availability of therapies. There remains a need for better therapies and Dr Henderson has been conducting a trial at Wesley hospital for 3 years which will be the focus of the talk.

  • Professor David Coman is a passionate rare disease advocate, physician and researcher. David engages with multiple rare disease support groups and is currently involved in multiple projects aimed at novel disease discovery, improved diagnostic testing and treatments.

Date:      Monday 24th February 

Time:     5:45 pm for a 6:00 pm start 
                7:00 pm light refreshments

Location:                                               

Jon Douglas Auditorium
Level 8, East Wing, The Wesley Hospital
451 Coronation Drive, Auchenflower Q 4066

This event is kindly supported by the Rosalie Martin Memorial Fund.

If you can't make the event, but you'd like to be notified when the video becomes available, please enter your details below:

  • We regularly update our community on the work we’re doing via newsletters, host events where our researchers can present their latest findings and conduct fundraising appeals to support our crucial research programs.
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