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OPWM 2024: Trauma Informed Care Within The Diagnostic Environment

55:40

GSNV Practical Wellness Month 2023- A Caregiver's Journey

2:27:01

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

RareNET OPWM 2024

The GUARD Collaborative monthly RareNET Forum hosted 2 presentations with the GSNV's October Practical Wellness month theme.
Featuring presentations by Lauren Robers, Rareminds and Matt Bolz-Johnson, EURODIS we hear of the effective co-design of mental health toolkits being developed specifically for the rare disease community
For a copy of the recording transcript and to request any additional informatin email info@gsnv.org.au

Відео

OPWM 2024: Trauma Informed Care Within The Diagnostic Environment

55:40

OPWM 2024: Trauma Informed Care Within The Diagnostic Environment

Переглядів 8321 день тому

Psychologist Anthony Hurst discusses with the GSNV CEO, Monica Ferrie and Genetic Counsellors Lyndon Gallacher and Anita Gorrie the ways trauma informed care can improve patient-centred service delivery especially, across the diagnostic environment for people living with genetic undiagnosed and rare disease. A copy of the transcript can be requested by contacting info@gsnv.com.au

GSNV Practical Wellness Month 2023- A Caregiver's Journey

2:27:01

GSNV Practical Wellness Month 2023- A Caregiver's Journey

Переглядів 6711 місяців тому

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.

GSNV practical Wellness Month 2023 -Empowering Ethical Decision Making

1:51:02

GSNV practical Wellness Month 2023 -Empowering Ethical Decision Making

Переглядів 2711 місяців тому

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"

Переглядів 54Рік тому

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

Переглядів 128Рік тому

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

Переглядів 704Рік тому

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

Переглядів 60Рік тому

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

Переглядів 3192 роки тому

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

Переглядів 3492 роки тому

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

Переглядів 2692 роки тому

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

Переглядів 1762 роки тому

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

Переглядів 3602 роки тому

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

Переглядів 2952 роки тому

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...