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Home » 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:

  • Ageing

  • Transition

  • NDIS

  • 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.

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

Healthcare Directories

Virtual Communities

Webinars & Podcasts

Support Groups

Klinefelter Support

Neuromuscular Support

NF Support