53:53
RareNET OPWM 2024
55:40
OPWM 2024: Trauma Informed Care Within The Diagnostic Environment
02:27:01
GSNV Practical Wellness Month 2023- A Caregiver's Journey
01:51:02
GSNV practical Wellness Month 2023 -Empowering Ethical Decision Making
01:08:50
GSNV Rare Disease Day 2023 "Nothing about us, without us"
03:44
What we know now | Diagnosis Day Episode 7
05:01
Impact of diagnosis | Diagnosis Day Episode 6
04:31
Finding support | Diagnosis Day Episode 5
05:05
The aftermath | Diagnosis Day Episode 4
05:34
Hearing the news | Diagnosis Day Episode 3
04:53
Not knowing | Diagnosis Day Episode 2
02:54
Meet the families | Diagnosis Day Episode 1
01:03
Trailer | Diagnosis Day
01:39:29
Genetic Support Network of Victoria Rare Disease Day Event 2022- recorded
03:32
Rare Disease Day: Lived Experience Series
58:04
How to build confidence in COVID vaccines for the Genetic, Undiagnosed and Rare Disease communities
03:05:02
GSNV Rare Disease Day Virtual Event 2021
08:19
My Genes and Me: Rare Disease Day
01:09
#mygenesandme
09:54
How has your genetic condition impacted you?
09:47
What has been your experience with the health system?
04:08
What is your experience with clinical trials?
05:48
What is your experience with genetic support groups?
05:51
What genetic condition are you supporting?
03:21
Life Insurance
01:41
How do you care for yourself?
01:26:21
Introduction to Violence Against Women with Disabilities webinar
11:46
Genetic Support Network of Victoria Volunteer Orientation 2020
33:33
Caring for Someone with Cystic Fibrosis
30:31
Caring for Two Children with Angelman Syndrome
27:41
Living with and Caring for Two Children with Ehlers-Danlos Syndrome
24:53
Caring for Someone with Pitt-Rogers-Danks Syndrome
11:12
Julie Cini (Spinal Muscular Atrophy Australia)
08:32
Heather Renton (Syndromes Without a Name)
10:36
Emily Shepard (UsherKids Australia)
12:37
Bronwyn Byrne (Leukodystrophy Australia)
14:37
Anna Hickey (Gorlin Syndrome Mutual Support Group)
46:18
Living with Alopecia Areata Universalis
34:40
Living with Neurofibromatosis Type 1
16:49
Living with Neurofibromatosis Type 2
32:03
Living with Cystic Fibrosis
21:57
Living with Huntingtons Disease
18:18
Living with Leukodystrophy
22:39
Living with Leukodystrophy
54:45
Living with Pallister-Hall Syndrome (PHS) and Gelastic Seizures
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About
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.
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