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RARE DISEASES

Rare Disease Day

Thousands of children and adults all over the world live a more challenging life due to rare diseases. This makes Rare Disease Day an important event – and one we’d love you to join!

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Rare Disease Day takes place on the last day of February every year. People all over the world live a more complex life due to conditions such as MPS, HAE and Fabry. This is what we’re here to change, and we need your help to make the lives of thousands of people better by improving their diagnosis journey.

Rare Disease Day 2017

Rare Disease Day celebrated its 10th anniversary this year. People from over 90 countries took part in events to raise more awareness than ever before!

Find out more about the events from 2017 over on the Rare Disease Day website:

What is a rare disease?

Rare diseases are often life-changing conditions that affect an extremely small per cent of the population. Symptoms can be subtle, persistent, lay dormant for years or be pronounced early in life. The main challenge in every case is that their sheer rarity makes accurate diagnosis difficult.

The more people who become aware of rare diseases the better. We’re so passionate about Rare Disease Day and the good it can do in raising awareness. Because the more minds we can change, the more lives we can change too.

Will you join us?

We hope so! It’s so simple to get involved and your support isn’t just appreciated, it can make a difference.

To begin with, you can sign up to our newsletter so we can update you on next year’s activities, plus news on all the other events we have coming up.

Thank you for your support.

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Our children may have small bodies, but their courage is huge. They bear their fate with incredible dignity.

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Have you got a story?

Have you taken part in an awareness campaign or do you have plans to? We would love to hear about it. Raising awareness of rare diseases is so important which is why we want to make as much noise as possible about your activities, events or anything else that gets people talking about rare conditions!

Tell us your story

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