that time again

What time, Speccy?

Why, dear reader, Rare Disease Day! Those of you who were around this time last year may remember videos, anxiety about an event and me practising my burble for the Health Minister…

The 2013 theme for Rare Disease Day is Rare Disorders Without Borders– particularly relevant to a small island on the far west of Europe with its own international border.


NI Rare Disease Partnership are co hosting a joint event with the charities interested inΒ rare disease in the Republic of Ireland. There will be Ministers, an EU bod, professors of complicated things, and examples of effective cross border health care work.

Most importantly of all, there will be patients, carers and families telling tales of living with rare disease, sharing their expertise with the Ministers, the policy makers and the commissioners. It is only by working together that we can begin to address the issues that affect us all- international boundaries are far from our only concern.

Our fabulous, dynamic, innovative event (I hope!) will be held in City Hall, Dublin on 28 February. In the unlikely event of me not having nagged at you before, and you’re interested in attending, you can register here. It will be well worth attending.

At least one of the speakers will be devastatingly gorgeous spellbinding.


24 thoughts on “that time again

    1. My wee bit will be hugely anxiety raising for me, but only a small part of the whole thing. Being part of the organising committee has been a real learning experience πŸ˜‰

  1. No society is complete without professors of complicated things. Hopefully they will be able to make them less complicated for their less erudite audience.

    1. It should be interesting, Nick. With many rare conditions, it’s the patients and families who have had to become the experts, so I’m hoping we’ll have a big group of participants rather than ‘speakers’ and ‘audience’, but there’s a lot to still work out!

    1. Why, thank you L πŸ™‚ When I started volunteering I was a human signpost at the local cancer centre; now I get to write things in my pjs and go to the odd meeting. My role in this event isn’t huge, but it’s important to get the family voice in there- it’s not all about professors and policy wonks. We need them to hear us!

      1. I feel your intensity of determination. The “us” are the ones who suffer, who know the aching details of an hour in a day–we are an *equal* part of the team, rightly so. Without us, there would not be a team. So there!

  2. That is definitely not my type of song but I really like it – think it is really moving.
    When you are up there is anyone allowed to shout ‘Way to go Specs’? Then pretend it was not them.

  3. I am so glad to hear you’ll be speaking again! You are passionate about a personal topic, and that, for me, makes a riveting speaker. I’ll be cheering you on, and eager to hear more. It is important and I think what a gift you’re giving to your girls, who will one day have a clear vision of what it means to put action with our observations and concerns! oxo

    1. Thank you Debra. We have had to lobby a little to ensure that personal voices are in there, so i’ve got landed with putting my money where my mouth is!!
      I will be writing more, and may even remember to take pictures.

  4. There’d be a lot more money for research into rare diseases if the British government wasn’t squandering it all on nuclear missiles, futile wars and tax breaks for millionaires….

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