Rare Disease Day Feb 28 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!
๐ก 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.
[Rare Disease Day Global Chain of LIghts, a person sits on a recumbant bike, the bike is lit up with multiple coloured lights]
To be added to our tag list, see instructions here
@777Bre777 @adaptablePomegranate1587 @adequatelyInadequate @adventurousBranch3786 @AffyAvo @agreeableTurtle1021 @amusingTalker1267 @Aqua1494 @Arsalanahmed @Ashleylovescats @AttentiveEar @audienta @Averayne93 @Azalea98 @azuladragon34 @BacktotheTrail @BeyondTheInvisible @BlindGrapefruit @blissfulTouch29 @bouncyVoice4149 @Breezy2013 @CaringBrit @CheeryPotato @CheerySandi @ChildGoddessFlute @Colorfulcatsofhope @considerateBunny7436 @crystallizedrequiem @Daisy7cups @DichotomousDetia @disneymoonlight @Disneywoman @DoISayIt @DylanMark @Edobre399 @Emiliako @emotionalTalker2260 @enthusiasticTortoise6681 @fairmindedWater1140 @Fireskye13 @FrenchMarbles @friendlyEars8792 @goldenSpruce1512 @IcedCoffee211109 @InfiniteThoughts2k19 @Jamesjones10123 @jovialButterfly6752 @JoyfulUnicorn @JoyIntoDarkness @K87 @kenzixo @killaj0ule @kwheelz @lightTriangle7748 @LikeABirdWithoutWings @lovelycoacoa @lovelySun2900 @LoveMyRotty @magnifiedfaith @ManinblacK @MeaningfulSilence @Meowsicle @MistyMagic @mnhtx3 @modestHickory2783 @modestOcean1286 @moosprbrk @MyNameIsNicole @NaomiR @NevaehRose @NotKhan2 @OneErased @philosophicalAcai7803 @pinkbunnywabbit @Pixiechu @placidMoth @PotFullOfSky2020 @rainbowVibes @Raysofsunshineandrainbow2005 @redGrapes1822 @Redheadmadeofglitter94 @repen13 @reservedCat9143 @sabeyesofblue3535 @SmolBurrahobbit12 @SparklyCat @specialPurple1582 @StarsOrchidsOwls @stuffiessytem @sunshinegiraffe123 @SystemOfWolves @theboymoana @TimidBear @TomatoEmi @turquoiseHemlock900 @u2canwin @wahmbrenda @WeedyGarden @wonderfulRainbow817 @xandia @Xisle @Zed786
@AffyAvo
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.