From the Team
Wow, the last month has been huge! It’s so satisfying to look back at what’s been achieved, what foundation has been laid, and what difference has been made. I think we can say at the GSNV there has been lots of great things achieved in the past month and we are so grateful to all those who have been part of it.
Firstly Rare Disease Day.
This is always an important day for people with rare conditions as it provides an opportunity to focus on part of our community that is often fighting for their voice to be heard. In 2019, Rare Disease Day focussed on bridging the gaps in the coordination between medical, social and support services in order to tackle the challenges that people living with a rare disease and their families around the world face every day.
The Genetic Support Network of Victoria (GSNV) was established in 1997 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. Rare Disease Day is one way we fulfil our purpose.
We chose to hold an event to discuss the impacts of rare disease across a range of issues identified by our support groups at the Strengthening the Support Sector Workshop. Our amazing speakers were fantastic, so open and challenging. Presentation topics included:
- Ageing with a rare condition
- Mental Wellness
- NDIS for people with rare conditions
- Transition – life stage transitions for people with rare conditions
- Health System Experience for people with rare conditions
- Familial Impacts of a rare condition
We have only commenced this discussion with all areas forming the agenda for our InFocus series around Melbourne to dive deeper into these issues, to explore how we bridge existing gaps and to determine what action we need to take.
We progress our discussion around the impact of ageing with a genetic, undiagnosed or rare condition on 12 March at the Monash Medical Centre.
Rare Disease Day also provided the perfect time to announce real and comprehensive commitment to collaboration. The Genetic Support Network of Victoria is one of five organisations forming a national collaboration to raise the patient and consumer voice in genetics, undiagnosed and rare disease - GUARD. The other organisations are state organisations - Genetic Alliance Australia (NSW), Genetic and Rare Disease Network (WA), Syndromes without a Name (SWAN – National) and Rare Voices Australia (RVA). There are currently no umbrella support organisations in QLD, SA or Tasmania.
This collaboration will ensure that Victorian voices are heard at a national level and recognised by the Federal Government.
We are readying ourselves during March to:
- confirm organisations to host Masters of Genetic Counselling students as part of the Genomics in Practice unit of study,
- begin filming our lived experience series with people with genetic conditions and those who support them
- further important discussions about ageing
Other exciting things are happening at GSNV
Rare Disease Day was the perfect place to launch our new resource platform and portal – The Genetic Link. You will find it easy to navigate, loaded with resources across a range of stakeholder groups and can be confident that all resources available meet standards for credibility and legitimacy.
We invite you to engage with us around:
1. Genomics in Practice
The GSNV will again in 2019 be seeking host organisations for the Masters in Genetic Counselling students Genomics in Practice unit which seeks to provide students with an understanding of the role of the support sector in the health and wellbeing of people with genetic conditions and those who support them.
Last year students said this unit had such an impact that it changed the way they would practice as genetic counsellors. We will be seeking organisations in March and we’d love to hear from you. firstname.lastname@example.org
2. Lived Experience Series
Sharing lived experience increases understanding. We will commence filming lived experience interviews of people with conditions, support group leaders and family members in April. We are seeking people who would like to share their story. We’d love to hear from you to share your email@example.com
3. Our Volunteers
We have recently recruited a new volunteer cohort (as well as maintained many from 2018) and we would like to make them available to you for projects and support group activity.
Please contact us to access a firstname.lastname@example.org
We have our GSNV wants to know polls, our newsletter, our monthly e-Newsletter Bits and Pieces, Supporter Group Shout Outs all of which we would welcome your input, your feedback and your events. Don’t hesitate to contact us with you thoughts or news.
Finally, you may have noticed a new look at GSNV, we are incredibly grateful to Swinburne University and in particular Molly Woolgar for designing our new branding.
As always, we have so many opportunities to work on, so many journeys to ease, so many yet unexplored challenges. One thing though is always clear; together we are stronger.
Monica Ferrie, GSNV CEO
Pain Revolution Rural Outreach Ride 2019
Taking over Tasmania for a 700km ride between Devonport and Hobart, 16-23 March, 2019.
WHEN: Friday, April 12th 2019, 9am – 4:30pm
WHERE: Auditorium of Queensland Children’s Hospital, Brisbane, Australia
Towards a Better Life Workshop
Wednesday 13th and Thursday 14th March 2019
9.00 am to 4.30 pm
Box Hill Town Hall - Whitehorse Room
1022 Whitehorse Road, Box Hill VIC
Cultural Diversity Week - 'Proud to belong'
16 - 24 March 2019
SBFV Adult Recreation Camp 15th-17th March
Enquiries: email email@example.com or ph 9663 0075
In the media
To celebrate Rare Disease Day in Australia the Executives of Genetic Alliance Australia (NSW), Genetic and Rare Disease Network (WA), Genetic Support Network of Victoria (Vic), Syndromes Without a Name (SWAN) Australia and Rare Voices Australia are excited to announce that we have formalised our collaborative approach to working to improve the lives of people with genetic undiagnosed and rare diseases via the GUARD collaborative. Jan Mumford from GAA wasn't able to be in attendance at the 'signing' but was there in spirit.
$3 million for rare childhood brain disorders
$38.6 million for rare cancer and diseases clinical trials
New epigenetic cervical cancer test has 100 per cent detection rate
Origins of depression brought into focus in large-scale genetic study
Alzheimer's disease: Scientists restore memory in mice through epigenetic treatment