28 Feb 2019
Thu 28 February, 2019
Murdoch Children's Research Institute (Meet at Reception) Flemington Road Parkville, VIC 3052
2019 events in Australia
Each year, families with
10 Feb 2019 Perth
Rare Friends is a community
24 Feb 2019 Cairns
Join us for this special
25 Feb 2019 Canberra
For year 12 health studies,
27 Feb 2019 Cummins
AllheART Australia will
28 Feb 2019 Melbourne
On behalf of the organising
28 Feb 2019 - 01 Mar 2019
The event - what will we
28 Feb 2019 - 03 Mar 2019 Melbourne
AllheART Australia will
28 Feb 2019 Melbourne
Rare Disease Day, a day
28 Feb 2019 Melbourne
Rare Star Day is an exclusive,
10 Mar 2019 - 12 Mar 2019 Gold Coast, Queensland
To celebrate Rare Disease
10 Mar 2019 Perth

GSNV Presents: Rare Disease Day 2019 28 February 2019 Murdoch Children's Research Institute (Meet at Reception) Flemington Road Parkville, VIC 3052, Melbourne, Australia
Hosted by Genetic Support Network of Victoria

Rare Disease Day, a day that raises awareness of rare diseases the impact of living with a rare disease, will soon be upon us. As usual Rare Disease Day will be held on the 28th of February, with organisations all over the world celebrating the important event.

This year’s theme is bridging the gap been medical services and social and support services. The GSNV has been aware of the gap in care when leaving the health system and being supported by community services. In our August Strengthening the Support Sector event, this gap was discussed in many different contexts. The conversations highlighted the impacts across the sector, from things like mental wellness, to funding for support services. For the last 12 months the GSNV has been thinking and speaking about this issue so we were glad to see this will be emphasised in the 2019 Rare Disease Day.

This year we are taking the opportunity to highlight some of the challenging areas that have been discussed with us over the last 12 months. Through our support group events and conversations we have with our clients, these key areas were brought to our attention:




Mental wellness

Familial impact

Navigating the health system

GSNV’s 2019 Rare Disease Day will take the form of short presentations followed by small group conversations that aim to further understand the challenges in the above areas and explore ways that the GSNV and the support sector can better help the rare disease community.


9:00am-9:15am: Introduction

9:15am-10:30am: Topic Presentations

10:40am-11:40am: Discussion Circles

11:40am-12:00pm: Next Steps/Closing

Lunch Afterwards

Share this