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TREAT-NMD
@TREAT_NMD
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50 min |
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Come and chat with the TREAT-NMD representatives at the @SMAEurope 2020 Conference in Evry for information on how we can support the neuromuscular community #RareDisease #SMA pic.twitter.com/3XSxQ1hldB
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Sunshine
@ABousquette
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1 h |
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We know. I have 3 #RareDisease CVID,Keinbock,Presiers & brittle bones. I depend on life saving monthly. I will die without them. Let me know so I can prepare to die. pic.twitter.com/wGqLhUJh9k
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IPPOSI
@IPPOSI
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1 h |
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We fully pledge our support to the patients and families of Rare Disease. We will continue to support @RareDiseasesIE and advocate for the implementation of the National Rare Disease Plan. #RareDisease #RareDiseaseDay twitter.com/RareDiseasesIE…
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Marni Cartelli
@Purrfectly_Rare
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2 h |
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Thank you!
Interesting fact I just found out in my research
No chemotherapy drug for cats is #FDA approved
If she is a candidate for treatment it will be off-label just like her #RareDisease mom 😀
They only have approved treatments for dogs
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RDMD
@rdmd
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2 h |
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“Prepare for your daughter to die very soon,” the doctor told them. ow.ly/tbPX50ydl4j #ITP #raredisease
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Chiasma Pharma
@chiasmapharma
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3 h |
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Answer: According to @NIH, to be classified as a #raredisease, the condition must impact 200,000 people or less.
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Columbus Children's Foundation
@ColumbusChildrn
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3 h |
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This significant contribution by Viralgen will go a long way to provide access to AAV manufacturing in order accelerate programs for ultra-rare diseases which has been a significant bottleneck in gene therapy. #genetherapy #rareasone #RareDisease contractpharma.com/contents/view_…
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ALD Raremark
@ALD_Raremark
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4 h |
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What exactly is Adrenoleukodystrophy (ALD)? ALD is a rare genetic condition that’s passed from parent to child, here we explain more about the condition: #ALD #Adrenoleukodystrophy #RareDisease raremark.com/adrenoleukodys… pic.twitter.com/5PmaUDMyYJ
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Valene
@LilDaisyGrl
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5 h |
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#lgsstrong #raredisease #lennoxgastautsyndrome #wefightasafamily we have the amazing friends that send us updates new groups research etc and giving us hope that research is out there trying to cure LGS and all epilepsy #epilepsywarriors💜 #teamlovingshiloh #teamchanning @czi pic.twitter.com/cZg0Z8Yl9r
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Myasthenia gravis
@myastheniaRM
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7 h |
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Do other conditions have symptoms like #MG?
#myastheniagravis #raredisease
raremark.com/myasthenia-gra… pic.twitter.com/IHf9oKJxdI
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Global Genes
@GlobalGenes
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20 h |
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Remember to define your research goals when embarking on a natural history study. #DataDIY #RareDisease pic.twitter.com/fJKALBqkmw
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CZI Science
@cziscience
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22 h |
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.@FibroFoundation supports development of research and therapies for children and young adults fighting fibrolamellar carcinoma, a rare liver cancer. Learn about the 30 patient-led groups working to find treatments for their #RareDisease #WorldCancerDay chanzuckerberg.com/rao/the-fibrol…
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Global Genes
@GlobalGenes
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23 h |
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Jennifer Canvasser
@jenncanvasser
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23 h |
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When Micah died just before his 1st bday from complications of necrotizing enterocolitis, not a single NEC charity existed in the 🌎.
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 twitter.com/NECsociety/sta…
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CZI Science
@cziscience
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3. velj |
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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 czi.co/RareAsOneNetwo…
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Sanfilippo Syndrome (MPS III)
@Sanfilippo_RM
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3. velj |
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What advice would you give to parents whose child has just been diagnosed with Sanfilippo?
#Sanfilippo #MPSIII #raredisease pic.twitter.com/1JaREv4FGe
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Rare Revolution Mag
@RareRevolutionM
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2. velj |
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Have you seen the #IAmNumber17 campaign yet? If not, check out: iamnumber17.geneticalliance.org.uk #RareDisease pic.twitter.com/bB3SyO32LJ
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Princess, The Tower
@APainPrincess
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2. velj |
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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 buff.ly/2SQCSad
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Rare Disease UK
@rarediseaseuk
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1. velj |
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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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Andra Stratton
@livinlavidalopo
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1. velj |
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Just when you summit one mountain, you realize there are many more. #raredisease #nevergiveup pic.twitter.com/FRwoUEw48R
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