Rare Disease Day February 28th 2021 by Anthony Heard
On February 2nd I was delighted to join a special Zoom meeting to preview the Rare Disease Day 2021 campaign. It was truly inspiring. The event this year will be bigger than ever and has numerous opportunities for us all to get involved. Even by making some very small contributions we can all help to spread awareness and make the campaign a huge success. So please do try to take part.
Some Facts About Rare Diseases
The annual Rare Disease Day campaign started in 2008 and is always celebrated on the last day of February, because the day itself is rare !
A rare disease is defined by the European Union as one affecting less than 1 in 2000 people. ITP is one of those rare diseases. There are about 6000 known rare diseases altogether.
In the UK, a single rare disease may affect up to 30,000 people. The vast majority of rare diseases will affect far fewer people – some a handful, or a single person in the entire UK. To put ITP into perspective, it is estimated that there are about 5000 ITP sufferers in the UK at any one time.
One of the difficulties of understanding ITP numbers is that many people may be suffering with it without knowing it. I was experiencing ITP symptoms (bruising & tiredness) for a year before I went for a check up in 2006. About 25-30 percent of ITP sufferers are diagnosed whilst being examined by a doctor for something else.
About 1 in 17 people will be affected by a rare disease at some point in their lives. This is approximately 3.5 million people in the UK and 30 million people across Europe. Building awareness is so important because there is no cure for many rare diseases and many go undiagnosed for ages.
We ITP sufferers know the frustrations & uncertainties as there is no cure for our illness, albeit we have numerous treatment options. We also appreciate the difficulties of diagnosis because ITP is diagnosed by exclusion. 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 other people’s diagnosis experiences but nonetheless it was still pretty harrowing.
What I Will Be Doing for the Rare Disease Day Campaign ?
I will be posting out daily updates every day of February on all the ITP Support Association social media platforms and on my own personal forums too. Anthony will also be dedicating my weekly ITP blog to Rare Disease Day topics.
I have listed all of the links that you can follow updates on, at the end of this article. Please help to spread any postings to as wide an audience as possible by re-tweeting, liking & re-posting items as often as you can.
I will also be attending the Rare Disease Day Parliamentary Zoom meeting on February 24th. This event will be addressed by some of the leading campaigners in the rare disease community and representatives from all of the UK nations Government’s. Anyone may attend but you must pre -register. See the link at the end of this article to reserve your place.
I have attended many previous Rare Disease Day House of Commons Receptions and I can confirm that they are a wonderful opportunity to meet some truly inspiring people, whilst also getting updates on developments in the rare disease community. Do attend this years online meeting if you possibly can.
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.
However small your action might be, it will definitely help and as former US President Barack Obama once said -
“ Change will not come if we wait for some other person or some other time. We are the ones we've been waiting for. We are the change that we seek “.
So let’s not miss this fantastic opportunity, let’s be the change !
Best wishes, stay safe and remember -
Rare Is Strong - Rare Is Many - Rare Is Proud !
Take care everyone
Rare Disease Day 2021 - Links to All You Need to Know
What is it all about - https://www.rarediseaseday.org/article/what-is-rare-disease-day
Rare Reach Festival - How to showcase your own story by photo, blog, video - https://www.raredisease.org.uk/news-event/rarereach2021/
Rare Disease UK - https://www.raredisease.org.uk
Rare Disease Day Parliamentary Zoom Meeting February 24th how to register - http://eepurl.com/ho7qA5
The ITP Support Association social media updates are on -
Website - www.itpsupport.org.uk
Twitter - @ITPsupportAssoc
Facebook - https://www.facebook.com/ITPSuppAssoc
Instagram - itpsupportassoc
Anthony Heards Social media updates are on -
My Blog - Something To Write Home About - https://anthonypaulh.tumblr.com
Instagram - anthonyheard1960