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Rare Disease Day

February 28 @ 9:00 am - 5:00 pm



Reframe Rare for Rare Disease Day 2020

Friday, February 28th, 2020

There are more than 300 million patients, each supported by family, friends and a team of carers, that make up the rare disease community worldwide. Over 6,000 different diseases.

Collectively, they make up the third largest country in the world.

We need society to understand that millions of people living with a rare disease around the world face inequitable access to diagnosis, treatment and care.

It’s time to take action for people living with a rare disease to have equal opportunities to realise their potential.

Rare Disease Day is entering a new phase, focusing on reframing what it means to be rare for the next decade of the campaign. We need everyone to get involved and join the movement to reframe rare!


9.30-9.35am Welcome

9.35-9.45am The Victorian Landscape

9.45-10.15am RDNow Launch

10.15 -10.30 The Victorian Support/Advocacy Landscape: Collaborative Efforts – What is the GSNV doing in this space

10.30 – 11.00 A research perspective : how can support group advocacy support research

11.00-11.15 – Morning Tea

11.15 – 12.15 A Support Group Advocacy and Lobbying Case Study

Lunch 12.15-1.30pm

1.30-3.00pm Workshop: Designing your own advocacy campaign

Coffee Break 3.00-3.15pm

3.15-4:15pm Mackenzies Mission Update

* If you are attending please contact us with any dietary requirements *

Directions to Health Education and Learning Precinct.

Make your way to Ground level also known as Main Street
If you entered through any of the main entrances you are on Ground level G
If you came by car take any lift to Ground level G

Locate the Main information desk on Main street a large white desk next to the “Creature” sculpture. It is North of the Silver, Blue, and White lifts and South of the Green lift

Proceed to Yellow lifts opposite main information desk
or take the stairs just north of the information desk to Level 1

The entrance to the HELP is a short distance to the LEFT from the Yellow lift entrance on Level the stairs lead to the HELP main entrance also.

We are starting the day in Vernon Collins Theatre, 1.050.

If you get lost call Gus 934 57881 or David 934 54646


February 28
9:00 am - 5:00 pm


Genetic Support Network of Victoria
038341 6315
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