RARE DISEASE DAY – FEBRUARY 28th, 2025

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by mervyn

RARE DISEASE DAY – FEBRUARY 28th, 2025 By Anthony Heard

As I write this article we have just completed another annual, Global ITP September Awareness campaign. No sooner is one of our major events over than we start preparing for the next.

As members of EURORDIS (Rare Diseases Europe) and regular contributors to Genetic Alliance – Rare Disease UK, we at the ITP Support Association have been taking a full part in Rare Disease Day since 2010.

The Rare Disease Day event has numerous opportunities for us to get involved. Making the smallest contribution can help to spread awareness and make the campaign a huge success.

The annual Rare Disease Day campaign has been running every February since 2008 and it continues to grow bigger each year.

The theme for 2025 will be – EQUITY –

Some Facts About Rare Diseases

A rare disease is defined as one that affects less than 1 in 2000 people. ITP is definitely one of those illnesses. Overall there are about 6000 known rare diseases & over 80 auto immune conditions.

Over 300 million people World wide are living with a rare disease .

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 patients – perhaps a handful, or even one person. With ITP it is estimated that there are about 4000 sufferers in the UK at any one time.

But one of the difficulties of understanding rare disease numbers is that many people may be suffering with one without knowing it.

I had ITP symptoms for a year before I went for a check up in 2006. I had no idea there was anything seriously wrong with me. Around 30 percent of ITP sufferers are diagnosed after 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. This is about 3.5 million people in the UK, 30 million people in Europe & 300 million Worldwide.

We ITP sufferers know the frustrations & uncertainty of our illness. We appreciate the hazards of diagnosis as ITP is detected by exclusion. All potential causes for our reduced platelet counts are ruled out before ITP is confirmed.

My ITP diagnosis took 8 hours on a fraught Friday night in A and E. That is not as wretched as some diagnosis experiences but it was still pretty nerve wracking. I have had better Friday nights !

What We Will Be Doing for the Rare Disease Day Campaign ?

We will be posting out updates throughout February on all the ITP Support Association social media platforms and my own personal forums .

Please help to spread awareness by re-tweeting, liking & re-posting these items as often as you can. We have to make some noise ! If we don’t then who else will ?

Why Get Involved with the Rare Disease Day Campaign ?

The annual Rare Disease event improves knowledge amongst the general public of all rare diseases and encourages researchers & decision makers to address the needs of those living with rare diseases.

By joining the campaign we are helping ourselves to better treatment, research, diagnosis and support for all rare disease patients and their families.

The ITP Support Association have always supported and promoted the Rare Disease Day campaign and we have had some valuable recognition & feedback from the rare disease community for the work we are doing.

During the Rare Disease Day 2023 we did a TWITTER takeover. It was a great opportunity to raise awareness for ITP and the ITP Support Association. We received lots of excellent feedback from other rare disease patient support groups.

Last year I was invited to share my ITP story for a film curated by Genetic Alliance UK & aired on ITN Business. The link to that story is here – https://geneticalliance.org.uk/news/rare-conditions-the-real-people-behind-the-stats/

So please check out the links below to keep in touch with the 2025 campaign and please join in.

Let’s not miss this fantastic opportunity and remember that –

None of us can do everything, but we can all do something.

USEFUL LINKS for RARE DISEASE DAY 2025

What Is Rare Disease Day ? – https://geneticalliance.org.uk/campaigns-and-research/rare-disease-day/

To get regular updates on the Rare Disease Day Campaign –

https://www.rarediseaseday.org/what-is-rare-disease-day/

Rare Disease UK – https://geneticalliance.org.uk/campaigns-and-research/rare-disease-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 Genetic Alliance UK – https://geneticalliance.org.uk/news/me-and-my-itp/

SOME FACTS and STATS about Rare Diseases and Genetic Conditions – https://geneticalliance.org.uk/wp-content/uploads/2024/02/Rare-conditions-factsheet.pdf