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GSNV practical Wellness Month 2023 -Empowering Ethical Decision Making

1:51:02

GSNV Rare Disease Day 2023 "Nothing about us, without us"

1:08:50

What we know now | Diagnosis Day Episode 7

3:44

Impact of diagnosis | Diagnosis Day Episode 6

5:01

Finding support | Diagnosis Day Episode 5

4:31

The aftermath | Diagnosis Day Episode 4

5:05

GSNV Practical Wellness Month 2023- A Caregiver's Journey

The GSNV's October Practical Wellness program covers the topic of vicarious trauma and it's effect on Carers of those living with Genetic, Undiagnosed and Rare Diseases. Nadiah discusses offers practical tips on common feelings associated with the Carer experience.

มุมมอง: 22

วีดีโอ

GSNV practical Wellness Month 2023 -Empowering Ethical Decision Making

1:51:02

GSNV practical Wellness Month 2023 -Empowering Ethical Decision Making

มุมมอง 1110 หลายเดือนก่อน

The GSNV's October Practical Wellness Program offers a comprehensive workshop for Support Groups and Carers of those living with Genetic, Undiagnosed and Rare Diseases on ethical decision-making. This workshop is designed to support the delivery of advice and support to individuals and their families across the diagnosis journey to make informed, autonomous decisions across areas of genetic tes...

GSNV Rare Disease Day 2023 "Nothing about us, without us"

1:08:50

GSNV Rare Disease Day 2023 "Nothing about us, without us"

มุมมอง 52ปีที่แล้ว

Join the Genetic Support Network of Victoria (GSNV) to celebrate Rare Disease Day 2023. Whether you’re living with a genetic, undiagnosed or rare condition, or you support someone who is, you’re invited to join us on this auspicious day. For people living with a rare disease equity means social opportunity, non-discrimination in education and work, and equitable access to health, social care, d...

What we know now | Diagnosis Day Episode 7

3:44

What we know now | Diagnosis Day Episode 7

มุมมอง 120ปีที่แล้ว

More Australians live with genetic diseases than with diabetes. We end the series with advice from each family to others starting their own diagnostic journey or trying to cope with difficult news.

Impact of diagnosis | Diagnosis Day Episode 6

5:01

Impact of diagnosis | Diagnosis Day Episode 6

มุมมอง 700ปีที่แล้ว

Each family describes the difference that a diagnosis made: from targeted treatment to vastly-improved health outcomes, from external credibility to a new sense of self-efficacy.

Finding support | Diagnosis Day Episode 5

4:31

Finding support | Diagnosis Day Episode 5

มุมมอง 54ปีที่แล้ว

What are ‘lived experience experts’ and why are support groups so vital? From practical tips to profound insights, each family’s journey is changed by meeting other people like them.

5:05

The aftermath | Diagnosis Day Episode 4

มุมมอง 315ปีที่แล้ว

People explain how they coped in the immediate aftermath of a diagnosis: where they found information, how they interpreted it, and how they managed their own feelings.

Hearing the news | Diagnosis Day Episode 3

5:34

Hearing the news | Diagnosis Day Episode 3

มุมมอง 343ปีที่แล้ว

Families recall the moment they first heard their diagnosis. What doctors say in that moment can profoundly affect the way people approach their future.

4:53

Not knowing | Diagnosis Day Episode 2

มุมมอง 264ปีที่แล้ว

Each family recounts their ‘diagnostic odyssey’: a journey of questions, tests and procedures to find the cause of symptoms that can’t be explained.

Meet the families | Diagnosis Day Episode 1

2:54

Meet the families | Diagnosis Day Episode 1

มุมมอง 170ปีที่แล้ว

Meet six Aussie families who live with rare genetic conditions. This micro-series follows their search for answers, options and community. @melbournegenomics7915

1:03

Trailer | Diagnosis Day

มุมมอง 359ปีที่แล้ว

What difference does a diagnosis make? This micro-series follows people with rare genetic conditions as they search for answers about their future. Produced by Melbourne Genomics Health Alliance and the Genetic Support Network of Victoria.

Genetic Support Network of Victoria Rare Disease Day Event 2022- recorded

1:39:29

Genetic Support Network of Victoria Rare Disease Day Event 2022- recorded

มุมมอง 2782 ปีที่แล้ว

Join the GSNV in celebration of Rare Disease Day with a virtual journey to focus on “Global Themes, Local Action”. Rare Disease Day takes place on the last day of February each year. This year the Genetic Support Network of Victoria held a virtual event to raise awareness amongst the general public and our community of Genetic, Undiagnosed and Rare Disease patients, their families, support grou...

Rare Disease Day: Lived Experience Series

3:32

Rare Disease Day: Lived Experience Series

มุมมอง 1212 ปีที่แล้ว

Vision: To create opportunities to strengthen connection and linkages with key stakeholders and decision makers, through patient lived experience narrative and video presentations demonstrating that lived experience. Working together to make informed and better decisions to improve the health of Victorians living with genetic and rare conditions and their interaction with health services and ke...

How to build confidence in COVID vaccines for the Genetic, Undiagnosed and Rare Disease communities

58:04

How to build confidence in COVID vaccines for the Genetic, Undiagnosed and Rare Disease communities

มุมมอง 1593 ปีที่แล้ว

The Genetic Support Network of Victoria presents vaccine expert, A/Prof. Margie Danchin from the Murdoch Children’s Research Institute (MCRI) in a webinar for the genetic, undiagnosed and rare disease patients, their families and carers. A/Prof Margie Danchin will spent the first 30 mins of the session covering: • COVID-19 vaccine overview including how vaccines are developed and the approval p...

GSNV Rare Disease Day Virtual Event 2021

3:05:02

GSNV Rare Disease Day Virtual Event 2021

มุมมอง 493 ปีที่แล้ว

Rare Disease Day takes place on the last day of February each year. This year the Genetic Support Network of Victoria will hold a virtual event to raise awareness amongst the general public and our community of Genetic, Undiagnosed and Rare disease patients, their families , support groups, clinicians and researchers, health professionals and anyone who has an interest in rare diseases. Our the...