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Are you
#RareAware ? Get in touch with us to volunteer, learn more information, and find ways to partner with the rare disease community.#icareforrarepic.twitter.com/BNjrJH6e5R
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Mariam al-Attar, winner of the
@findacure_fdn student voice essay competition, raising awareness of the difficulty of procuring rare disease treatment#rareaware#TRAPS#RareDx2018pic.twitter.com/LkVxnLMeuW
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Wonderful to see our latest
#RareAware exhibition on display to highlight the impact of rare disease. It is in@TyPawb in wrexham until 5 May.#raredisease#NationalLottery#artswalespic.twitter.com/sLX4jxKPvd -
#RareDisease fact: A rare disease is defined by the EU as affecting fewer than 1 in 2,000 people. With a total of 7,000 known rare diseases, they are individually rare but collectively common#RareAware pic.twitter.com/kz00Cxw7nk
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September is
#RDAM let's make some noise about#scleroderma#systemicsclerosis and make people#rareaware!#research#treatment#JSRDpic.twitter.com/DepeftnAdi
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So excited to be collaborating with
@RareBham@Bham_Childrens on this patient perspectives event with talks about how to handle rare diseases in primary care. Limited tickets. 1st March 2018#rareaware Sign up here: https://docs.google.com/ …/1FAIpQLSeGbex6YncdBgAkFl…/viewformpic.twitter.com/8Rgev7geOI
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Wonderful to see more coverage of the Beauty of Rare Project, enabling us to highlight the impact of
#raredisease https://www.huffingtonpost.co.uk/entry/photo-series-struggle-of-living-with-rare-disease_us_5baa483ce4b07dc0b87e1e67?ncid=other_twitter_cooo9wqtham&utm_campaign=share_twitter …@BigLotteryWales#rareaware -
Shout out to the 350 million people worldwide living with a rare disease. Every single day gives us new chances to reach out to the amazing rare disease community, by offering patient groups training and support
#rareaware pic.twitter.com/6IqiwvMIZz
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We see some familiar faces! We wanna see more, known to us and unknown! We love meeting new
#rareaware advocates, patients, and NPOs!#dazzle4rarehttps://twitter.com/lseiders3/status/1161353056157650946 …
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Your mission if you choose to accept it: change your
#Facebook cover photo to this and share with ONE friend. Always encourage the#rareaware folks in your life to share their stories.#dazzle4rarepic.twitter.com/4gL4ljliXi
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What a fantastic example of why scientific funding is essential. A new life for a child.
#rareaware https://apple.news/AlOGaP5vzT0OWcdisVl4LUA … -
@crayonlegs Sarah Lippett speaking about her experiences of rare diseases, expertly illustrated as always#rareaware#patientperspectivepic.twitter.com/1LS8yuAPEl
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We personally invite
@NEPANSPANDAS to join#dazzle4rare 13th - 20th August and reach a wider#rareaware audience! Contact us for more info. pic.twitter.com/AbcUcTHoH5
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Individually rare but collectively common. Are you
#RareAware? https://twitter.com/rarediseaseday/status/1194967061715398657 …
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Great to grab a
#lotteryselfie with#lotteryfunded@SBDRareProject#thankstoyou National Lottery Players they are making people#RareAware across#NorthWalespic.twitter.com/2v5BofFvBU
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Happy
#GeneticCounselorAwarenessDay to the Manton Center GCs@CasieGenetti and@Dr_Jilly! Thanks for all the work you do to facilitate rare disease research#RareAware#partnersincrime#research#projectmangers#NationalSTEMDaypic.twitter.com/IgZXbh6BmB
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About 50 percent of Niemann-Pick Disease Type (NPC) cases affect children before age 10. But some NPC patients, like Dee Reynolds of Northern Virginia, are not diagnosed until age 60.
#RareAware#RareDiseasehttp://ow.ly/BMn150xXkwU -
We create many early detection campaigns for our clients. It’s vital we find ways to stop misdiagnosis and diagnosed, untreated.
#rareaware https://twitter.com/primary_immune/status/916028095383195649 …
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