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Learn how disease natural history information can be used as a historical control in
#raredisease#clinicaltrials in our recent@Pharmafocus Pharmafile article http://ow.ly/L8ir50ybwcn .@US_FDApic.twitter.com/5Bj86k3HQz
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What advice would you give to parents whose child has just been diagnosed with ALD?
#ALDAwareness#raredisease#leukodystrophypic.twitter.com/FqFEQMz9lU
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Today's
#MetabolicMonday fact is about Urea Cycle Disorders. Please share this post to help us raise awareness of Inherited Metabolic Disorders.#fact#RareDisease#IMD#UCDpic.twitter.com/09TSCOQ96L
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Patients of rare diseases offer us a chance to reveal the secrets of complex diseases. Please take them seriously and please hear their voice.
#RareDisease https://twitter.com/ern_rnd/status/1224255303476228096 … -
The
@ChanZuckerberg to fund 30 patient groups, each receive $450,000, aiming to build a model for advancing research in a#RareDisease via@RebeccaDRobbins@statnewspic.twitter.com/6OACbBtam1
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What five words would you use to describe life with CF?
#CysticFibrosis#rareheroes#raredisease pic.twitter.com/loIJ0DZcxi
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MPS I is a hereditary metabolic disease. A diagnosis of MPS I is based upon identification of characteristic symptoms, a detailed patient and family history, a thorough clinical evaluation and a variety of specialized tests.
#EveryLifeIsPrecious#raredisease pic.twitter.com/ATN73W0gL5
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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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Having a
#raredisease can be isolating, but we have been so encouraged to see such a strong community of#advocates online.#Dermetel works with rare skin and metabolic diseases; and we can't wait to make new friends.pic.twitter.com/ZVu9aKc91A
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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 -
Happy
#superbowl
Sunday! Remember, people living with #raredisease can often feel isolated from social events due to the limitations of their disease. If you have a#raredisease patient in your life, reach out today. pic.twitter.com/ifw60CguYL
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Not a bad day to have a birthday
. Thank you @APShay and@UpliftingAth for all you do in the#RareDisease community. https://twitter.com/UpliftingAth/status/1224052799211757568 …
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Here are the top 10 countries involved in
#raredisease research in Share4Rare. Will you join us? Sign up today: http://bit.ly/S4RRegistrationEng … 1 Spain
2 United Kingdom
3 Argentina
4 Chile
5 Mexico
6 United States
7 Ecuador
8 Panama
9 Italy
10 Belgium
pic.twitter.com/gkMAwhYdQ9
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Autoimmunity & Primary Immunodeficiency disorders -Two highly unlikely disease "partnerships" increasingly being co-identified via genomic science https://bit.ly/3b4fT2d
#serverless#meded#scicomm#bigdata#iot#snrtg#autoimmune#PrimaryImmunodeficiency#genomics#RareDisease pic.twitter.com/UuZdOEijmM
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ONE OF A KIND What do you do if your child has a condition that is new to science?
#genetics#raredisease https://www.newyorker.com/magazine/2014/07/21/one-of-a-kind-2 … -
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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Just when you summit one mountain, you realize there are many more.
#raredisease#nevergiveuppic.twitter.com/FRwoUEw48R
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Scientists suspected a never-before-described
#PrimaryImmunodeficiency disorder -DNA sequencing proved them correct... _News: https://www.rockefeller.edu/news/27419-unusual-patient-case-cmv-rare-immune-deficiency/ …#serverless#rstats#itrtg#technology#iot#bigData#scicomm _Journal: https://www.nejm.org/doi/full/10.1056/NEJMoa1910640 …#genomics#immunology#RareDisease pic.twitter.com/lHySABqzDl
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Did you know that
#VC-backed, purpose-driven companies represented 12% of all capital invested in Europe in 2019? We're proud to be counted among this growing number of#techforgood firms working to impact society - in our case#raredisease communities. https://www.weforum.org/agenda/2020/01/tech-startups-values-purpose-europe/ … -
#IAmNumber17 changemakers are sharing their own unique experiences to help the voices of those with rare diseases be heard! http://ow.ly/O9oK50y75BX#RareDisease#Awareness pic.twitter.com/UgWvtTnkmj
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