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28 February 2018

Rare diseases are more common than you think

Written by: Adam Pawley, Medical Writer at Edelman

BioScience

Today is Rare Disease Day!

February 28th will see the 11th international Rare Disease Day, where, in hundreds of locations globally, events will be held to raise awareness about the impact of rare diseases and to encourage researchers and policy makers to work towards advancing knowledge and progress. In 2017, events were held in 94 countries and we are aiming to do even better this year! The theme for this year’s event is ‘research’ with a focus on the thousands of people working daily to develop improved diagnostic tools, treatments and improved care for patients and their families. The 28th February is an opportunity for us to get together and put a long-overdue spotlight on rare diseases.

What is a rare disease?

We have all heard of HIV or malaria, but what about Banti’s Syndrome or Progeria, which causes premature ageing and death at an average age of 13 years.  These are examples of rare diseases.  In the EU, a rare disease (aka an orphan disease) is defined as one affecting less than 1 in 2000 people.  However, with 6000–8000 rare diseases documented, this accumulatively means that 6%–8% of people in the EU live with a rare disease, equivalent to the combined populations of the Netherlands, Belgium and Luxembourg. The global burden is significant, with rare diseases affecting approximately 300 million people.

People with a rare disease have lower than average life expectancy with most diseases currently having no approved therapy or cure. Misdiagnosis is common due to lack of clinical knowledge, healthcare resources and support.

BioScience is getting involved with Rare Disease Day 2018!

At BioScience, we work closely with several clients across a number of rare diseases and so we understand the challenges patients face and the impact rare diseases have on their day-to-day lives.

What are we doing and what you can do to support rare disease day

You do not have to be personally affected by a rare disease to help raise awareness – everyone can get involved! We have filled our London office with the official Rare Disease Day posters and painted our faces, check out the Rare Disease website to see why!  We encourage you to help out by posting an image or selfie on social media with your face painted and include the hashtags #ShowYourRare, #MyRare or #RareDiseaseDay.

Let’s work together to make rare diseases rare!

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