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GSNV Info
Australia
เข้าร่วมเมื่อ 6 พ.ย. 2019
The Genetic Support Network of Victoria (GSNV) was established in 1997 in response to a changing complex environment; in recognition of the importance of a broad consumer voice in genetic health; acknowledgement of a gap in existing support for many rare, undiagnosed and genetic conditions and to increase awareness of the challenges faced by people with genetic conditions and those who support them.
The GSNV is proudly supported by a grant made possible by the Department of Health and Human Services, Victoria. The GSNV thanks its financial members and acknowledges the kind donations.
The GSNV is proudly supported by a grant made possible by the Department of Health and Human Services, Victoria. The GSNV thanks its financial members and acknowledges the kind donations.
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
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
มุมมอง: 110
วีดีโอ
OPWM 2024: Trauma Informed Care Within The Diagnostic Environment
มุมมอง 8321 วันที่ผ่านมา
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
มุมมอง 6711 หลายเดือนก่อน
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
มุมมอง 2711 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"
มุมมอง 54ปีที่แล้ว
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
มุมมอง 128ปีที่แล้ว
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
มุมมอง 704ปีที่แล้ว
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
มุมมอง 60ปีที่แล้ว
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.
The aftermath | Diagnosis Day Episode 4
มุมมอง 3192 ปีที่แล้ว
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
มุมมอง 3492 ปีที่แล้ว
Families recall the moment they first heard their diagnosis. What doctors say in that moment can profoundly affect the way people approach their future.
Not knowing | Diagnosis Day Episode 2
มุมมอง 2692 ปีที่แล้ว
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
มุมมอง 1762 ปีที่แล้ว
Meet six Aussie families who live with rare genetic conditions. This micro-series follows their search for answers, options and community. @melbournegenomics7915
Trailer | Diagnosis Day
มุมมอง 3602 ปีที่แล้ว
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
มุมมอง 2952 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
มุมมอง 1222 ปีที่แล้ว
Rare Disease Day: Lived Experience Series
How to build confidence in COVID vaccines for the Genetic, Undiagnosed and Rare Disease communities
มุมมอง 1653 ปีที่แล้ว
How to build confidence in COVID vaccines for the Genetic, Undiagnosed and Rare Disease communities
GSNV Rare Disease Day Virtual Event 2021
มุมมอง 1023 ปีที่แล้ว
GSNV Rare Disease Day Virtual Event 2021
How has your genetic condition impacted you?
มุมมอง 1663 ปีที่แล้ว
How has your genetic condition impacted you?
What has been your experience with the health system?
มุมมอง 243 ปีที่แล้ว
What has been your experience with the health system?
What is your experience with clinical trials?
มุมมอง 123 ปีที่แล้ว
What is your experience with clinical trials?
What is your experience with genetic support groups?
มุมมอง 423 ปีที่แล้ว
What is your experience with genetic support groups?
What genetic condition are you supporting?
มุมมอง 353 ปีที่แล้ว
What genetic condition are you supporting?
Introduction to Violence Against Women with Disabilities webinar
มุมมอง 3324 ปีที่แล้ว
Introduction to Violence Against Women with Disabilities webinar
Genetic Support Network of Victoria Volunteer Orientation 2020
มุมมอง 2224 ปีที่แล้ว
Genetic Support Network of Victoria Volunteer Orientation 2020