what February is all about

Well, my February that is. I assume you may have other priorities, but round these parts February is traditionally the month of panic.

29 Feb, itself a rare day, is international Rare Disease Day. This year our charity is having two events that day- a conference during the day and a political reception from 5-7pm in Parliament Buildings. If you’d like to join us for either our both of these, you can register through the links on our website.

Events mean lists (speakers, contact details, exhibitors) and many questions (where are the lanyards? special diets? did anybody find a template for…?). I visited the venue last week and realised that they remembered our last event there well, because we’d had too many folk turn up determined to display their info and leaflets, and all the tables in the place got commandeered. Pinched from the lounge area, and rooms we hadn’t booked. We both learned – they bought more tables, and we agreed a maximum number. Potential exhibitors will have to book a place and we need to be prepared to be ‘bad cops’ on the day. I wonder could I get somebody else to do that? Would you like to do it?

The morning session will showcase examples of how patients and families influence work in the rare disease world, using the charity’s themes of educating, advocating and innovating. The afternoon session is about problem solving- how can we be creative and actually move things forward? We hope to be discussing a prototype information hub, but we don’t have long left to have the hack day to develop that. Aargh! Someone else is panicking about that. I get tables and car parking and programmes and presentations. Another gets to worry about the big wigs and political shenanigans.

Everybody has something to be anxious about, and we muddle through. There may be bad words under my breath, or spoken loudly for only Jake to hear. There, undoubtedly, will be some chaos and a last minute dramatic near disaster.

But none of that matters. We will be gathering together, those of us who used to be isolated and alone. There will be hugs and giggles and time spent with people who understand. We’ll be talking with those who help us make progress, for everyone affected by rare disease in the region. By gathering together, we will remind ourselves and that we are not alone, that we have much to learn from each other, and that we are #StrongerTogether

Rare Disease Day events are to celebrate, and to raise awareness amongst those who do not live in our world. We will have cake.

vic sponge

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