RAREfest

It’s less than a month now until the very first RAREfest in Cambridge UK!

Graphic image for the RARE fest event with a colourful shape representing DNA

This is a brand new event run by Cambridge Rare Disease Network to try and broaden awareness and discussion around rare conditions, celebrate diversity, showcase research, medicine, science and technology…. and inclusive design!

Cambridge is actually our local city, and it’s amazing to find ourselves in the heart of one of the most active hubs of genetic research and hi-tech industry! In the past, CRDN have run rare disease conferences for the experts in the field, but this year it’s all about reaching a wider audience and bringing different perspectives together!  From genetic researchers to rare people (like my J), from medical professionals to patients and families….!

And it’s a free event!

A launch evening on Friday 30th November and an all day festival on Saturday 1st December at the Guildhall in Cambridge (as it’s seated you do have to book tickets in advance for the Friday evening segment) and you can find out lots more info on the CRDN website here: #RAREfest

J and I are going to be involved in various different ways throughout the festival!

The first thing is that J* has become a #RAREambassador for the #RAREsolutions school’s competition, running parallel with the festival!  The competition is open to all all secondary and sixth form students throughout the UK to inspire the next generation of scientists, designers and engineers to think inclusive!

There are three challenges which require a design solution, and you can view them all and enter here (the closing date has been extended to 12pm Monday 15th November so there’s still time if you have an awesome idea to share!): #RAREsolutions

One of the challenges is set by us, and is based around an issue very close to our hearts, and that is, inclusive playground equipment (or lack of choice thereof!).  This is our video (didn’t the kids did so well!?)….

The second thing is a performance on launch night!

This year J (well our whole family really!), have become members of Unique Feet, CRDN’s group for families of children with rare conditions.   It’s been lovely to meet more children and families in our area, who are living with the challenges of rare disease, and we’ve enjoyed taking part in various fun inclusive activities, from horse riding to trampolining!

To help illustrate the amazing spectrum of diversity that makes up the rare community, the children have been working with Studio Wayne McGregor to create a dance performance that will form part of the launch night programme!

You can support the project here: UniqueFeet

And finally, I’m going to be taking a stand at the festival on Saturday (1st December), as The Inclusive Home, to talk all things inclusive design and to highlight the need to be mindful of the social model of disability… particularly in the context of the (amazing, yet slightly scary) super speedy advances in genetic research!

Do come over and say hello if you can make it!

*(I refer to J & W by their middle initials most of the time because, other than me, all my family have first initial E and it gives her and her brother a little less searchability on the web – although of course I do tend to blow their cover from time to time!)

 

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