Bits and Pieces March 2019

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.

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

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

4,  Communications
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.

Warm regards,

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 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.


$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


Anyone can become a member of the GSNV, and we'd love to have you on board too. Our current members include:
  • support groups
  • individuals and families impacted by genetic conditions
  • health professionals
  • students
  • interested individuals
  • members of the community
The membership fees are used to fund the GSNV Small Grants program that supports the vital work of support groups who are often under resourced and in need of a helping hand.

  • Keeps members informed and updated
  • Includes research, resources, services, and policy updates
  • The GSNV runs peer support training every year, and it is free for financial members
  • The GSNV assists with facilitated support group training
  • Support with setting up, incorporating and developing governance
  • Volunteer support and access for projects
  • Accessing resources

Find out more here.
If you would like to be featured in our Bits n Pieces newsletter and you have an event, news story, or resource you would like to share, please email 

International Society on Early Intervention 
Early Bird Deadline: 15 March 2019
April 6 @ 10:00 am - 4:00 pm
April 7th @ 9:00am

Down Syndrome Victoria will have a selection of workshops coming up for parents, carers and people with Down syndrome covering topics such as relationships and dating, sexuality and adulthood, parenting and positive behaviour management. View training calendar here

Down Syndrome Australia is planning for World Down Syndrome Day in March 2019 and they want you to be a part of their online campaign. They are looking for 21 people with Down syndrome to tell the world: 

What Makes You Proud?
Get creative and don’t hold back!
Are you an artist and want to share your work?
Did you write a song or learn an instrument?
Did you face your fears and do something for the first time?
Did you work really hard on something and finally make it happen?
Did you reach a sporting goal?
Are you a great friend or helper?
Are you proud of who you are?

Send your idea to Leticia at


Carers Victoria are running the following workshops:

5, 12 & 19 March - NDIS Disability program
6 & 13 March - Aged Care program
14 March - Caring For Yourself workshop
20, 27 March & 3 April - NDIS Disability (Mildura) 
27 March - Powers of Attorney workshop
2, 9 & 16 April - Dementia program

LGBTIQA+ carers program

All LGBTIQA+ carers are welcome to join the following free sessions, located in Carlton.

Bookings essential via or phone 9658 9190.

•Friday 15 February 10am to 12.30pm. Yoga and meditation.

•Tuesday 26 February 5.30pm to 8pm. Queer art therapy.

•Friday 15 March 10am to 12.30pm. Picnic at Collingwood Children’s Farm.

•Tuesday 26 March 5.30pm to 8pm. Get pampered.

•Friday 12 April 10am to 12.30pm. Social brunch.

•Tuesday 30 April 5.30pm to 8pm. Social dinner.

Youtube Video: NDIS explained
For more information, please visit or contact Dr. Tamara May (email: / phone: 03 9244 5084). 
Carers Dementia Conference 25th June 2019


Our GSNV volunteer Kim An, who is ageing with a genetic condition herself, has created this month's poll questions. Enjoy!

Some genetic conditions, such as cystic fibrosis, have evolved from being a childhood disease to a long-term chronic condition, as continual advancements in treatments have enabled individuals to transition into adulthood. Thus, whilst paediatric centres still hold great importance, it is now recognised that adult care is just as vital for the management of diseases in everyday life.

So the GSNV Wants to Know...

1. Have you noticed a change in the classification of your genetic condition from a “childhood disease” to a “long-term chronic condition” by health professionals? 25% said no, 75% said yes

2. Do you believe there is growth in this space, or a better understanding of what it is to age with a genetic condition within the health sector? 60% said yes, 40% said no

3. Are there services (eg. care, financial) currently available to support those ageing with a genetic condition? 20% yes, 80% said no

Want to participate in the next GSNV Poll?
Like our Facebook page here

James Tavlian GSNV Volunteer: Database of Genetic Conditions and Support Groups

How many support groups are there in Victoria? Or in Australia? Which conditions have their own support group? We know that there are hundreds of groups, from small groups with a local presence or a Facebook page to large, Australia-wide organisations. 

The GSNV would like to know more specific answers to these questions and be able to better direct people to information and the most relevant support.

To do this, I am involved in a project to create an internal database with information regarding conditions and support groups, including contact details, locations and websites.

This will allow the GSNV to quickly point a person requesting support in the right direction – especially for rarer conditions for which support may be harder to find.

New support groups continue to be created and details and contact information changes so the database will need to be maintained but it will be a great resource for the GSNV once set up.

Thank you AllheART for facilitating art activities at our Rare Disease Day event! 
Read the GSNVs Summer Newsletter here



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Genetic Support Network of Victoria · Royal Children's Hospital · Murdoch Childrens Research Institute 50 Flemington Road · Parkville, VIC 3052 · Australia

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