Rare Disease Day February 28th

Rare Disease Day zebra

Every year at the end of February, people with Rare Diseases gather from all over the world to raise awareness, by taking part in various events to get the message out to the general public and decision-makers, how these diseases can affect patients lives.
On this day hundreds of patient organisations over the world raise awareness both locally and nationally for their rare disease communities in their countries. The campaign mainly targets the general public and also policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a general interest in rare diseases.
EURORDIS first launched Rare Disease Day in 2008, along with its council of Alliances thousands of events have taken place throughout the world reaching thousands of people and getting a great amount of media coverage.

The campaign started as a European event but over the years more countries got involved. The theme is Research, with the message being that research can bring hope for the future for people living with rare diseases. The slogan is 'with research, possibilities are limitless'
Imagine going to your Dr and being diagnosed with a rare disease that the Dr doesn't know much about, can not offer any effective treatment and there is no cure, this is the reality for many of the patients living with these diseases, which is why there needs to be more work carried out.

What is a Rare Disease?

A rare disease is defined by the European Union as being one that affects less than 5 in 10,000 of the general population, there are between 6,000 and 8,000 known rare diseases. 1 in 17 people will be affected by one of these at some point in their lives. 80% have a genetic component to them and are chronic, life threatening or life limiting.

EDS is classed as one of the Rare Diseases that needs more research into, whether it is treatment, improved care or even a cure, this condition according to a leading expert has been neglected for too long, with many patients not being diagnosed correctly due to lack of knowledge and as a result becoming very disabled by the disease. 
I was diagnosed with EDS Hypermobility in 2014, after suffering for many years with unexplainable symptoms and undergoing lots of therapy and tests to try and find out any answers as to the underlying problem, as a consequence of this, when I was finally diagnosed my mobility had deteriorated considerably, I was in terrible pain all the time and was experiencing other new problems. This should never have happened but sadly it does and I am not the only one, as not enough is done for rare diseases, all the research and work is focused on common problems that are seen by G.P's daily.

Events like this are so important to the lives of people like myself for people to know what we are living with every day, in the hope that just one day we may be given a cure or at least some treatment that would make a big difference to our quality of life.
The main charities for EDS are working hard all the time looking into research and I am sure will be doing all they can on the day to spread the message about EDS and how more needs to be done to improve the quality of lives for all that suffer. They have a slogan 'make our invisible visible' this is why it is featured in my picture with the zebra. 
You can get involved on the day by wearing your Jeans and taking a photo of yourself, or simply downloading the logo and displaying it on social media.  

Feel free to share your experiences living with a rare disease.
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  1. It's a wonderful day to spread this awareness! All of us join you and thank you for your great post!...sharing :)

  2. Thank you Lisa, it is a great day for raising awareness of EDS and other rare diseases. The next big day will be the 15th March when the new nosology comes out for EDS.