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"Lion's Mouth Opens" screening and discussion reminds all of us what courage means and why we need to know more, do more -NOW
#2015ggsummit -
Matt Wilsey: "genome sequencing should be first test, not test of last resort" ultimately cheaper & faster
#2015GGSUMMIT -
Beautiful networking evening @gobalgenes
#2015GGSummit pic.twitter.com/H5muoLGYLr
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#2015GGSummit Mikey and Kris Allen talking shop at our table!#healedpic.twitter.com/OhfC4IAyY6
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here's a picture of the venue!!
#2015GGSummit pic.twitter.com/Cht3feh5T5
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#2015GGSummit met Noah, the man who ran across the US to bring awareness to rare disorders.@run4rare@HemosUnitepic.twitter.com/F2GNkgLH76
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Christina at the Global Genes Gala this evening ||
#2015GGTribute#2015GGSummit || via kevinsucher on IG pic.twitter.com/6wuw1Q5vE8
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Powerful film on Huntington ' s disease # lionsmouthopen, with filmmaker Marianne
@GlobalGenes#2015GGSummit -
People are listening to
#raredisease advocates. $176B of orphan drugs in next 5yrs! - Alison Silva#2015GGSummit pic.twitter.com/22uzNs9qcY
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@RARE_Science bears! Keep an eye on Rare Science Christina Waters#2015GGSummit pic.twitter.com/gaCCCbLLqq
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Can't wait to be at
@GlobalGenes#2015GGSummit -
Sharing my story
#2015GGSummit about the importance of the patient family connection with the research community. pic.twitter.com/budEbDQt8v
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"patients are connecting faster via social media, but social media is a band aid for a broken system" --
@mattrwilsey#2015GGSummit -
Patient advocacy champions working on behalf of our
#cystinosis community@GlobalGenes#2015GGSummit Gala pic.twitter.com/1HOooFzBZ3
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LOVE that
@GlobalGenes is answering#2015GGSummit questions from their livestream audience via#RAREsummitQApic.twitter.com/QQIotexXVk
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Dr. Rao from
@US_FDA speaks abt how to maximize engagement in drug development process-first advice: create a patient registry#2015ggsummit -
Tips on advocating on Capitol Hill from
@RASopathiesnet#2015GGSummit pic.twitter.com/PX3NsPM5EI
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So honored to be able to listen to this parent advocate's story to help his daughter and other children
#2015GGSummit pic.twitter.com/ufDqaxR6WX
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Global Genes Rare Patient Advocacy Summit
#2015GGSummit pic.twitter.com/6D28GqZt4a
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We're at
#2015GGSummit learning about panel resequencing, data sharing and consent.#rarediseasepic.twitter.com/3S6ES9w6gk
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