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RARE DISEASE DAY – FEBRUARY 29th 2024
RARE DISEASE DAY – FEBRUARY 29th 2024
The Rare Disease Day event 2024 will be bigger than ever and has numerous opportunities for us to get involved. Even by making small contributions we can help to spread awareness and make the campaign a huge success.
The annual Rare Disease Day campaign has been going on now every February since 2008 and every year the event grows bigger and more far reaching.
Some Facts About Rare Diseases
A rare disease is defined by the European Union as one that affects less than 1 in 2000 of the general population. ITP is most definitely one of those rare diseases. Overall though there are about 6000 known rare diseases but new conditions are being discovered all the time.
Over 300 million people World wide are living with a rare disease and that is 3.5 to 5.9 per cent of the Global population.
In the UK, a single rare disease may affect up to about 30,000 people. The vast majority of rare diseases will affect far fewer people – some only a handful, or even a single person. To put ITP into perspective, it is estimated that there are about around 4000 to 5000 people diagnosed with ITP sufferers in the UK each year.
One of the difficulties of understanding ITP numbers is that many people may be suffering with it without knowing it. I had ITP symptoms (bruising and terrible fatigue) for a year before I went for a check up in 2006.
I had no idea that I had anything serious wrong with me. About 30 percent of ITP sufferers are diagnosed whilst being examined by a doctor for something else.
It is estimated that 1 in 17 people will be affected by a rare disease at some point in their lives. This is about 3.5 million people in the UK and 30 million people in Europe. Building awareness is so important because there is no cure for many rare diseases and some go undiagnosed for ages.
We ITP sufferers know the frustrations & uncertainty around there being no cure for our illness, albeit we do have numerous treatment options. We also appreciate the difficulties of diagnosis because ITP is diagnosed by exclusion, where all other potential causes for our reduced platelet counts are ruled out before ITP is ruled in.
My own ITP diagnosis took 8 hours on a very worrying Friday night in my local hospital. That is by no means as wretched as some diagnosis experiences but nonetheless it was still pretty harrowing. I have had better Friday nights !
What I Will Be Doing for the Rare Disease Day Campaign ?
I will be busy posting out updates every day of February on all the ITP Support Association social media platforms and on my own personal forums too.
Please help to spread any postings and updates that I make on social media to as wide an audience as possible by re-tweeting, liking & re-posting items as often as you can. This campaign will be successful if we spread awareness as far and wide as possible. We have to make some noise !
So Why Get Involved with the Rare Disease Day Campaign?
Rare Disease Day improves knowledge amongst the general public of all rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases. By helping the campaign we are helping ourselves to better treatment, research, diagnosis and support for all rare disease patients and their families.
It also helps that the ITP Support Association have always supported and promoted the Rare Disease Day campaign as we have had some great recognition within the rare disease community for the work that we are doing in ITP.
For example during the Rare Disease Day campaign for 2023 we were invited to do a TWITTER takeover and it was a great opportunity to raise awareness for ITP and the ITP Support Association. I enjoyed doing it and it was a great success. I received lots of excellent feedback from other rare disease patient support groups.
So please check out the links below to keep in touch with the 2024 campaign and do join in.
However small your action might be, it will definitely help so let’s not miss this fantastic opportunity to raise awareness and make an impact !
USEFUL LINKS for the RARE DISEASE DAY CAMPAIGN
What Is rare Disease Day ? – https://www.rarediseaseday.org/what-is-rare-disease-day/
Rare Disease Day 2024 Official Video – https://www.rarediseaseday.org
Sign up to get regular updates on the Rare Disease Day Campaign –
Rare Disease UK – https://www.raredisease.org.uk
EURORDIS – Rare Disease Europe – https://www.eurordis.org
How to Share Your ITP Story with the Rare Disease Day campaign – https://www.rarediseaseday.org/share-your-story/
My ITP Story on Rare Disease Day Website – https://www.raredisease.org.uk/rare-stories/anthony/
The ITP Support Association on Rare Disease Day Website – https://www.raredisease.org.uk/?s=itp&ct_bot_detector_event_token=04a107acb305a8c08c7f93c40903f0e4363ea1b76da4556beb77ae6971b6846d
Social Media Platforms where I will be posting Rare Disease information throughout February 2024 –
MY PERSONAL TWITTER: My Purple Patch @Patch1Purple