Mon 30 September, 2019

Reframe Rare for Rare Disease Day 2020

When the challenge of raising awareness for people affected by a rare disease still looms

On Rare Disease Day we must re-double our efforts

Re-think, re-envision, reimagine

Reframe what it means to be 'rare'

In fact - rare isn't scarce, rare isn't infrequent, rare isn't remote

Rare is not as rare as you think

The statistics speak for themselves

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.

Rare is many. Rare is strong. Rare is proud. 

The likely truth is that you know one of the 1 in 20 people affected by a rare disease.

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!

Rare Disease Day 2020 is on Saturday 29 February - a very rare day as it is a leap year. 

Now's the time to start planning your Rare Disease Day activities!

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