Podcasts by SMA Australia
Spinal Muscular Atrophy (SMA) is a rare genetic muscle wasting disease that is the childhood version of motor neurone disease.
If you are newly diagnosed, or have just come across our page for the first time, we urge you to get involved, within the SMA community here in Australia. We would love to hear from you and are happy to support you on your journey.
We acknowledge that each person is different, and we endeavour to assist you and your requirements.
Further podcasts by Alba Prime
Podcast on the topic Nachrichten
All episodes
The Benefits of Intensive Therapy (Webinar) from 2022-05-23T13:54:23
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Field Studies from the NSW Newborn Screening Pilot - Webinar from 2021-11-11T04:07:25
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What About Me? Accessing Treatments for Adults from 2021-10-10T22:04:25
We know the non-recommendation of both Nusinursen (Spinraza) and Evrysdi (Risdiplam) for the adult community has left many feeling deflated. We want to acknowledge this and also reassure you; we ha...
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Newborn Screening Advocacy Next Steps (Webinar) from 2021-08-19T00:46:34
Now that Newborn Screening (NBS) has been recommended, we turn our focus to the Australian states and territories, as this is where NBS gains funding. Each state has to allocate in their budget to ...
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Why do I need to see an adult Neurologist from 2021-06-28T06:43:52
Why do I need to see an adult Neurologist with Lauren Sanders
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Q&A with Jo Watson from 2021-05-27T05:31:29
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The Importance of a patient registry and why to participate from 2021-05-05T01:12:28
The Importance of a patient registry and why to participate
Guest: Robin Forbes
Visit http://smaaustralia.org.au for more inf...
Getting involved in sports with a disability from 2021-04-21T03:35:47
In this episode, we speak to Australian Paralympian Champion, Daniel Michel about getting involved in sports with a disability.
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Self Managing your NDIS from 2021-02-22T05:53
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Adult working group and next steps from 2021-01-26T22:51:10
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SMA Webinar - Best Practices from 2020-11-23T22:53:34
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Supporting the Emotional Health of our SMA families During Uncertain Times from 2020-10-23T22:36
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PBAC Processes and Consumer Input from 2020-09-21T03:22:24
Jo Watson shares information about the process behind PBAC and Consumer Input
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SMA Parliamentary Summit 2019 from 2019-09-18T09:27:56
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Fiona Tolich from 2019-09-04T06:57:21
Fiona Tolich
“My ultimate goal is to get access to treatment. New Zealand is the second lowest country in all of the OECD countries to get access to the expanded access program. We will ...
Al Freedman from 2019-08-01T21:30
Al Freedman
“We’re lucky to have our kids to however long we have them, and that’s how I feel about my son… think about what our kids can do.” - Dr. Al Freedman
Having a suppo...
June 2019 Update from 2019-06-03T02:28:31
Zolgensma drug by Avexis brought into Australia
Roche - https://...
NDIS self management from 2019-01-21T01:17:16
We speak with Ellie Robertson on her thoughts and process of NDIS self management.
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PBAC, Lobbying Goverment from 2019-01-15T00:20:32
Today's guest is Liliana Bulfone and Julie discusses the PBAC process and Spinraza.
Contact us at reception@smaaustralia.org.au or call...