It feels a little strange. It’s #rarediseaseday2015 and I’m at home, in pyjamas, not rushing about in a panic. I’m burbling on social media, avoiding writing a speech, but generally having a normal-ish day. It’s very odd.

For various reasons, our annual event is being held on Tuesday- the anxiety and chaos are simply delayed by a few days.

One of the top hotels on the island made our charity an offer of a splendid venue. We were delighted to accept, but the location presents its own risks in terms of turn out. We wanted to move away from the city, to bring academics, doctors and researchers close to patients, rather than making patients travel huge distances, again. To facilitate participation from folk who may not normally have the opportunity. But many healthcare professionals and managers have city based clinics, or aren’t allowed to travel outside their normal area, and may patients and families are, well, unwell. We can only try.

Ditsy and I are travelling together. The long term reader will recognise the signs of impending trouble. Goodness knows what tales there will be to tell, but there will be giggling and faffing and squabbling. The fancy hotel will not know what’s hit it.

We’ll turn up with a car full of posters and banners and popups and blu tack. I need to investigate bags of random stuff around the house to see if they contain conference essentials. We assume there will be emergency shopping. With any luck, I’ll remember to get my dress out of the dry cleaners.

I must write that speech.

It’s rare disease day, and my dress doesn’t matter.






5 thoughts on “#rarediseaseday2015

  1. Though I am sure your dress will be just as stunning as the rest of your contribution. Wish you success, from strength to strength. Could you ever have imagined when you started with this that the likes of the Lough Erne Resort Hotel would be getting involved at all? That’s stunning too.

  2. Happy Rare Disease Day 🙂 May the conference be insightful, impactful, emotional, enjoyable. Wishing you lots and lots of luck and success xxx

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