The Pen – a Rare Disease Day post

Rare Disease Day 2012

Rare Disease Day 2012

“Beneath the rule of men entirely great, The pen is mightier than the sword.” ~Edward George Bulwer-Lytton (1803-1873)

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I was wondering what else i could be doing to help raise awareness of Rare Disease Day 2012.

I mean I know that I am telling people … pretty much for the first time ever … about my own experiences of having a rare disease (or two); I’m doing this blog, and letting people know about it on Twitter and Facebook; I’ve written a piece that will be used as part of my work’s Health and Wellbeing section, being sent out to all staff on Wednesday; and I’m attending the launch of the Northern Ireland Rare Disease Partnership, and the Patient and Client Council report outlining the findings of a survey conducted into the experiences of obtaining a diagnosis of a rare disease in Northern Ireland being held at Stormont on the 29th itself.

But I was wondering what else I could do?

Then it hit me.  I was sitting in front of my computer, drafting a post on this blog, trying to figure out what I could do … I could use the technolofy that was – literally – at my fingertips.

So I did.

I just emailed a tonne of influential people.  This includes the First Minister and Deputy First Minister of Northern Ireland.  It includes the MLAs for my constituency. It includes the Mayor, Deputy Mayor and councillors of my local council.  It includes Stephen Fry.

… that last one is purely because it is Stephen Fry, of course!

Now, I am not sure if any of those worthy people will even read my email, let alone actually DO anything thereafter but if they do read it, and it sparks even the slightest interest, they may decide to do something and that, my friends, may just make a difference.
And that is surely worth a while of my time?

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If you are affected by a rare disease, or you know someone who is, please feel free to contact me if you would like to share your experience on here as that would be more than welcome!

@rarediseaseday #raredisease

2 thoughts on “The Pen – a Rare Disease Day post

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