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Hemophilia is an inherited bleeding disorder. Patients living with hemophilia, lack low levels of certain proteins called “clotting factors” due to which the blood does not clot properly.
#EveryLifeIsPrecious#raredisease pic.twitter.com/5zpgqM0ZqX
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Globetrotting.... look at that palm tree and sun ! Our
#journeytocuremichael has made it to a much warmer place#jamaica
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#globetrotter#jamaica
#sunnyday#wishwewerethere#globalawarness#raredisease#support#curespg50#ourjourneycontinues https://ift.tt/2Up6z34 pic.twitter.com/3szNQAyEkb
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“Having multiple illnesses is a full-time job you never get a break or get to take a vacation from. You can spend every waking minute managing your illnesses, staying on top of them…it’s so exhausting.” https://buff.ly/2uFWOT6
#ChronicIllness#RareDisease#ChronicPain -
Day 5: Aortic Anuerysms and other undiagnosed heart problems can be fatal. About half of 1200 people suspected with Marfan Syndrome don't know they have the condition. 600 people in Ireland at risk. Please Share and Like to help save a life.
#MarfanVictoryChallenge#RareDisease pic.twitter.com/wXzPyYYZcb
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My baby was diagnosed with
#Lymphoma She is only 6 & spent 5 of those years getting me through the hardest time in my life; my accident &#raredisease journey Hardest part=this AM I woke up w her pouncing on my face wanting to play pic.twitter.com/gDQ6z1g71e
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Are you satisfied with the healthcare you receive for your
#raredisease? Do you think your healthcare is well organised? Share your views via the new#RareBarometer H-CARE Survey: http://tiny.cc/h-care pic.twitter.com/YX3yewixtl
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Advocating for
#ectodermaldysplasias, seeing the expression on people's faces when I tell our story of how my boys are living with the condition and flourishing in the face of the#RareDisease in a clime like Nigeria is the best feeling in the world.@RareDiseases@NFED_ORG -
Right, Hugh. Worth emphasizing that all 4 randomized
#AI trials were conducted in China. The congenital cataracts one was small, multi-center in a#RareDisease condition -
When Micah died just before his 1st bday from complications of necrotizing enterocolitis, not a single NEC charity existed in the
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Micah & babies just like him compel me to do everything I can to help advance research so we can build a
without this devastating #RareDisease https://twitter.com/NECsociety/status/1224750233843728384 … -
Today we acknowledge all our patient organisations that support people affected by rare cancers. See them here: https://www.raredisease.org.uk/supporters/
#WorldCancerDay
#raredisease pic.twitter.com/anDzDZwwMO
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Results from the latest
#RareBarometer Voices survey -According to#RareDisease patients, the main risks associated with data sharing are: http://ow.ly/T51450ybBeU pic.twitter.com/Wp7OgodpG0
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“If we can work with these groups to figure out the model — then anyone can do this.” -
@TaniaSimoncelli on@ChanZuckerberg’s efforts to build a model for patient-led groups to make progress on#RareDisease. Read more in@statnewshttp://bit.ly/CZIrare -
We’re excited to announce 30 grantees to our
#RareAsOne Network. These patient-led organizations are partnering with clinicians and researchers to accelerate research for their#RareDisease https://czi.co/RareAsOneNetwork … -
Have you seen the
#IAmNumber17 campaign yet? If not, check out: https://iamnumber17.geneticalliance.org.uk/#RareDisease pic.twitter.com/bB3SyO32LJ
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“It’s hard to explain the disease and its complexity to your physicians/physiotherapists over and over again… and then explaining to our society what it is… It can feel so lonely. No one knows anything about it.” What It’s Like to Have a
#RareDisease https://buff.ly/2SQCSad -
Check out our paper
@Haematologica on the role of human PI3K-gamma in immunity!#research#raredisease http://www.haematologica.org/content/early/2020/01/27/haematol.2019.231399.full.pdf+html …pic.twitter.com/oxno4U2Dqk
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Want to get involved in
#RareDiseaseDay this year and take up a new challenge? Email jan.bochinski@geneticalliance.org.uk to find out about fundraising.#raredisease pic.twitter.com/qn9aOrdBmt
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Just when you summit one mountain, you realize there are many more.
#raredisease#nevergiveuppic.twitter.com/FRwoUEw48R
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