Rare Disease Day Photo Challenge

Update (March 1st) – I won the challenge, much to my surprise! Thank you so much to Rare Disease UK! It was great fun being involved, because I loved the theme of the campaign, and I really enjoyed seeing other people’s photos. So very well done to all involved. We can all be proud of our efforts to raise awareness during the month! 🙂

Happy Rare Disease Day! 🙂

Today is a wonderful international opportunity to raise awareness of rare diseases, conditions, disabilities, etc, to educate people and highlight the need for greater funding and research. Here in the UK, it’s led by Rare Disease UK. But there are events taking place worldwide, so there will be related organisations in many countries.

1 in 17 people have a rare disease, meaning it’s a lot more common than you might think. So even if you don’t have one yourself, chances are you know somebody who does. And if you do have a rare condition, you’re certainly not alone.

There are over 6,000 rare diseases, affecting over 300 million people worldwide (including 30 million in Europe). That’s a huge number! So this is a day for all of us unusual rarities to get together, along with anyone and everyone who supports us and the cause in any way.

This year, the theme is “Show your rare, show you care”, and everyone can get involved, regardless of whether or they you have a rare disease. So that includes patients, families, carers, medical professionals, policy makers and members of the public.

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Meeting Fashioneyesta

This Monday I finally got to meet one of my favourite Youtubers – Emily Davison from Fashioneyesta. We spent a delightful day together at Knole Park in Sevenoaks, and she’s posted a wonderful vlog about it on her second channel. So I wanted to blog about it from my own perspective as well, which I hope you enjoy!

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Journal – October-November 2016 (London Visit)

Welcome back to my latest journal posts. There wasn’t anything worth writing about in September, but recent weeks have been pretty eventful.

Down in Devon I’ve been to a stand-up comedy show with some work colleagues, and there are updates on our house sale too. I’ve also paid another visit to our new place in London, where my Aunt gave me a little tour of the local area, I went to the Sight Village exhibition and an aniridia meetup, I oversaw the installation of a broadband line for homeworking, and I made contact with a fellow blogger I’ve been following for a while. So I hope you enjoy it all!

Continue reading “Journal – October-November 2016 (London Visit)”