Top Tweets for #DaysofRare
For #ThrowbackThursday we are revisiting our #DaysofRare project, the image in this post is of Tayen, a wonderful ambassador for #EctodermalDysplasia.
See more here:
https://t.co/wmnjeyXwZS
#TBT #RareDisease #rarevoices #HED #nationallotterycommunityfund
@EDSocietyUK
This #throwbackthursday we're resharing Days of Rare, our first interactive online exhibition. If you've not yet visited the exhibition you can find it below:
https://t.co/wmnjeyXwZS
#DaysofRare #TBT #shareyourstory #raredisease #disability #inclusionmatters #NationalLottery
"My biggest fear is permanent sight loss.”
Behçet’s disease is a rare inflammatory condition that can affect almost any part of the body. To read more about Caroline please follow the link:
https://t.co/wmnjeyXwZS
#DaysofRare #behcets #nationallottery
@BehcetsUK
@behcets_usa
"It changes your perception of life. You have to learn to live with chronic pain. You have to learn to live with mobility issues.”
Read more about Angela's CMT journey:
https://t.co/wmnjeyY4Pq
#DaysofRare #CharcotMarieTooth #nationallottery
@CMTUnitedKdom @ecmtf @cmtausa
Tony was diagnosed with Alkaptonuria (AKU), also known as Black Bone Disease, at the age of 53. To read more visit our immersive exhibition here:
https://t.co/wmnjeyXwZS
#DaysofRare #shareyourstory #Blackbonedisease #AKU #AKUSociety #NationalLotteryCommunityFund
@AKUSociety
“I describe FOP as a bone disease, it's basically where your muscles turn to bone... and you are turning to stone”
To read more about Avi visit #DaysofRare:
https://t.co/wmnjeyXwZS
#stonemansyndrome #FOP #nationallottery
@FOPFriends @ifopa @_allstripes @FOPAustralia
We're grateful that we were able to include Rhys in our #DaysofRare project, his story is one of perseverance & hope, despite all odds. He works hard to raise awareness of #SuperficialSiderosis:
https://t.co/wmnjezf7Rq
@RhysHolmes
@LivingwithSS
@spinalCSFleak
@csfleakaware
We are so pleased that so many of you've visited our immersive online exhibition space for #DaysofRare, a unique photographic exhibition that is supported by written narratives, films and podcasts.
https://t.co/wmnjezf7Rq
#Raredisease #ShareyourRare #NationalLottery
“When I step in front of the camera I'm like that younger me before I got bullied”
Read more about Hannah & how she has learnt to embrace her life with #EctodermalDysplasia in our #DaysofRare project:
https://t.co/wmnjeyXwZS
@HannahHarpin @EDSocietyUK @NFED_ORG @ZebedeeMan
“I couldn’t hear properly before that. I couldn't always understand all that well, but now I can understand better because I can hear a lot more words and sounds.”
To read more:
https://t.co/wmnjeyXwZS
#DaysofRare #raredisease
@HannahHarpin @EDSocietyUK @NFED_ORG @ZebedeeMan
For Bonnie learning to live with & manage her rare condition has meant different things at different times in her life. Read about Bonnie’s life living with #haemophilia https://t.co/wmnjeyXwZS
#DaysofRare #NationalLotteryCommunityFund #haemophiliaawareness #bleedingdisorders
We loved working with Tayen, to read more about how her brilliant and positive outlook helps her as she navigates life as a rare teen in our #DaysofRare exhibition click on the link below:
https://t.co/rxis6adzUT
#EctodermalDysplasia #rare
@EDSocietyUK
@NFED_ORG @TNLComFund
“From having my condition my whole life I've learned as I've got older that actually, it doesn't matter that I'm different. Because we all are different.”
Read more about Tayen in our #DaysofRare exhibition:
https://t.co/wmnjeyY4Pq
@EDSocietyUK
@NFED_ORG
@CoppardSharon
Are you coming to #RAREfest22 on 25 & 26 November? We're bristling with excitement to be hosting the UK launch of the @SBDRareProject #DaysofRare photography exhibition. Moving photography of people living with rare conditions. Expect the unexpected! https://t.co/UxuQVMVX1D
As well as launching our immersive #DaysofRare exhibition online our work was exhibited at the recent @ConnectinPharma event in Geneva & will also be exhibited at the upcoming @camraredisease RAREfest 2022.
Find out more in #RarityLife:
https://t.co/JFMRlap4KQ
#Raredisease
As well as launching our immersive #DaysofRare exhibition online our work was exhibited at the recent @ConnectinPharma event in Geneva & will also be exhibited at the upcoming @camraredisease RAREfest 2022.
Find out more in #RarityLife:
https://t.co/JFMRlap4KQ
#Raredisease
We built a ‘Rare room’ in our studio and each scene was created around the individual and their condition. To find out more about #DaysofRare read our feature in #RarityLife issue 3:
https://t.co/CyYH2wlckN
#Raredisease #ShareyourRare #Rarevoices #RareStories #NationalLottery
We built a ‘Rare room’ in our studio and each scene was created around the individual and their condition. To find out more about #DaysofRare read our feature in #RarityLife issue 3:
https://t.co/JFMRlap4KQ
#Raredisease #ShareyourRare #Rarevoices #RareStories #NationalLottery
We love this film promoting the #DaysofRare exhibit at @ConnectinPharma. Find out more about how the event is supporting rare disease research with EspeRare Foundation and SbD Creative: https://t.co/2kRC8LoMXI
#RareDisease @SBDRareProject
Are you a parent that would like to share your family's #Raredisease story? Please drop us an email to [email protected] to find out more
#ShareYourRare #RarelyHeard #DaysofRare #RarityLife
@RareBeacon @GeneticAll_UK
“I always say to everybody to trust your instincts. If you don't feel well and you don't feel that that's the full story, then just keep on investigating.”
https://t.co/n2baB2SSgf
#DaysofRare #paraganglioma #neuroendocrinetumour
@AmendInfo @bsneuroendo @thereal_beanie
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