Today is Rare Disease Day – a campaign that has been running for nine years since EURORDIS (European Organisation for Rare Diseases) first founded the initiative in a bid to raise awareness for rare diseases. It started out as a European event, but the US joined the motion in 2009 and to date there are 85 countries in regions all over the world that will unite today to talk about these unusual illnesses.

 

What Is A Rare Disease?

There are different definitions of a rare disease, depending on which part of the world you belong to. In Europe, a rare disease is classified as being an illness that affects less than 1 in 2,000 people. However, in America the classification is fewer than 1 in 200,000 people.

In 80% of rare disease cases, the origins of the illness are caused by genetic predispositions, with the remainder usually being the result of viral or bacterial infection. Sadly, 50% of rare diseases are thought to affect children.

 

Common Problems With Diagnosis and Treatment

Some of the common problems that exist with rare diseases are related to the lack of knowledge and research surrounding the various illnesses. There can be considerable delays in diagnosis if doctors have not been trained to spot specific symptoms. Unfortunately, symptoms do not only differ widely between separate rare diseases, but can also be completely dissimilar between patients who suffer from the same illness.

Even when rare diseases have been accurately identified, it is not always easy for patients to be given access to quality treatment and care.

 

What Does Rare Disease Hope To Achieve?

The EURORDIS promotion hopes to raise awareness about rare diseases amongst the general public, as well as policy makers, researchers and health professionals who can be assisted in focusing more of their attention on these illnesses.

On an international level, the campaign successes of previous years have helped to achieve better cooperation in the fields of clinical and medical knowledge which is now shared more efficiently between nations.

The event this year should reach hundreds of thousands of people and will gather mass coverage on social media as well on the TV and radio.

 

Get Involved In Rare Disease Day

There are several ways to get involved in the event both online and offline.

  • You can ‘Raise and Join Hands’ by submitting a photo of yourself to the Rare Disease Day site and others raising your hands in solidarity.
  • If you have been a patient of a rare disease, then tell your story by uploading a photo or video telling your story.
  • Join the conversations on social media platforms such as Facebook, Twitter and Google+
  • You can attend a Rare Disease Day event – Richmond residents won’t have to travel far to reach their nearest event which is the Drug Repurposing for Rare Diseases Conference in Mayfair, London.
  • Some organisations may consider hosting their own event. Simply post your event online to advertise it to others and download the official communication materials such as posters, logo, information packs and social media badges.

Help spread the word on February 29th to raise awareness about rare diseases and help doctors get the right help at the right time for their patients.