Rare Disease Day Series: Australian Pompe Association
In recognition of Rare Disease Day, our staff member Emily had the pleasure of catching up with Renee Brown, Secretary for the Australian Pompe Association. Renee speaks about Pompe, its daily challenges, and the importance of raising awareness of rare conditions.
To learn more about Pompe and support available, contact Renee at [email protected].
To find out about peer Support Groups in WA, contact ConnectGroups at [email protected].
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26:40
Rare Disease Day Series: MELAS
As part of our Rare Disease Day podcast series, Emily speaks with Michelle Robinson about the rare condition MELAS, a mitochondrial disease which Michelle and her family live with.
To learn more about mitochondrial disease and support available, contact The Mito Foundation Support Network at [email protected].
To find out about peer Support Groups in WA, contact ConnectGroups at [email protected].
Music: https://www.purple-planet.com
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21:44
Rare Disease Day Series: Sotos Syndrome Association Inc.
As part of our Rare Disease Day podcast series, Emily chats with Lisa Rynne, the co-founder of Sotos Syndrome Association, about the rare condition, her experience as a mother of a child with Sotos, and the importance of raising awareness about rare, genetic, and undiagnosed conditions.
To learn more about Sotos Syndrome Association Inc, contact [email protected].
To find out about peer Support Groups in WA, contact ConnectGroups at [email protected].
Music: https://www.purple-planet.com
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14:13
Rare Disease Day Series: Trigeminal Neuralgia Support Group WA
In the lead up to Rare Disease Day, Emily catches up with Julia McDonald from Trigeminal Neuralgia Support Group WA who shares her journey of diagnosis and living with a rare condition, and provides information about the WA Support Group.
To learn more about Trigeminal Neuralgia Support Group WA, contact Julia at [email protected]
To find out about peer Support Groups in WA, contact ConnectGroups at [email protected].
Music: https://www.purple-planet.com
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20:58
International Day of People with Disability Feature: XYY Syndrome Assoc. of Australia
In the lead up to the International Day of People with Disability, ConnectGroups caught up with Amber Gilkes, founder of XYY Syndrome Association of Australia to talk about her experience as a mother of a child with XYY, and the importance of inclusion and raising awareness of the rare, genetic, and undiagnosed conditions sector.
To learn more about XYY, contact Amber at [email protected].
To find out about peer Support Groups in WA, contact ConnectGroups at [email protected].
Music: https://www.purple-planet.com
South Africa