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Rare Diseases Day

This year's theme is "care", placing even more focus on the care that people with rare diseases face. There are a number of ways to get involved, and you can join the conversation online by checking out the Twitter hashtag #rarediseases - feel free to share your own stories if you have them.

What is a rare disease?

A disease is defined as "rare" if it affects fewer than one in 2,000 people across Europe. In America, this is slightly different - a rare disease is one which affects fewer than 200,000 Americans at any one time. According to the European Organization for Rare Diseases (EURORDIS) around 80 per cent of all rare diseases are genetic, while other are cause by a range of factors including allergies, infections and viruses. Because of the high likelihood of genetic cause, about 50 per cent of rare diseases affect children.

Unfortunately, there's a real lack of scientific knowledge surrounding many of these diseases, and their effects will likely decrease a sufferer's quality of life dramatically - particularly those which are degenerative. Their rarity means that misdiagnosis is remarkably common, and appropriate healthcare can be delayed which the source of the disability is determined. Therefore it's important to make sure that rare diseases are afforded the time, funding and attention required to ensure sufferers are given access to suitable care as quickly and efficiently as possible.

How can I help?

Events are taking place across the UK on February 28th, from health conferences to fundraising coffee mornings. You can find out more by taking a look at the events listings or by setting up your own fundraising event - it can be something as simple as baking cakes to sell in the office or arranging something completely unique.

However you decide to help out, don't forget to let us know - we love hearing about how our readers are getting involved in community healthcare!

 

Resources

http://www.rarediseaseday.org/

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