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Rare Disease Day Feb 28 2023

AffyAvo February 28th, 2023

It's Rare Disease Day!

You can learn more about Rare Disease Day here

The theme this year is actually a continuation of the theme last year -

Share Your Colours (check out activity here)

and a new theme!

💡 Light Up For Rare:

Light Up This thread! Post below and share your lit up images and if you like a little note about why you are helping light things up for Rare Disease Day!


I will be in the Adult Disability Room at 11 pm EST to chat about rare diseases.


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[Rare Disease Day Global Chain of LIghts, a person sits on a recumbant bike, the bike is lit up with multiple coloured lights]

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AffyAvo OP February 28th, 2023

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AffyAvo OP March 1st, 2023

Chatroom info updated 😊

SilentSerenityy March 1st, 2023

@AffyAvo


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1 reply
AffyAvo OP March 1st, 2023

@SilentSerenityy Love it!

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audienta March 1st, 2023

@AffyAvo

landscape-water-cold-winter-light-cloud-1204117-pxhere-com_1677690402.jpg

source: https://pxhere.com/en/photo/1204117?utm_content=shareClip&utm_medium=referral&utm_source=pxhere

[a water drop on little crystals reflecting the sun]

I decided to take this picture with a water drop since I have aquagenic urticaria which is an extremely rare condition - according to DermNet there have been less than 100 cases been reported in the medical literature (source: https://dermnetnz.org/topics/aquagenic-urticaria). But I also have other rare conditions and feel with all the other patients who suffer from insufficient care in the medical and social system. We deserve better and I'm happy to spread the light.

1 reply
AffyAvo OP March 1st, 2023

@audienta That's beautiful and I like how you connected it to the urticaria.

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