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News and Research » 2018 » January » Rare Disease Day
Rare Disease Day
https://gsnvrdd.eventbrite.com.au
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:
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.
AGENDA:
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