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We are working hard here!
#RareDisease#NORDSummit2015 pic.twitter.com/k4vRojXCec
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Harsh reality of
#pediatricraredisease#NORDSummit2015 Dr Yao's slide. pic.twitter.com/Vf1Z9X6kr7
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Like all of communications, with branding be sure to avoid the "set it and forget it" mentality.
#NORDSummit2015 -
Best part of
#nordsummit2015 is meeting the patients and families -
Rare Disease Conference-an inspiration, Jono Lancaster, Treacher Collins Syndrome
#NORDSummit2015 pic.twitter.com/mwJRONoMR8
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Patients are not only sitting at the table but setting it and sending out the invitations
#raredisease#NORDSummit2015@AlportSyndFndn -
RT
@stephbozarth:#NORDSummit2015 My Rare Inspiration for relentless advocacy. Just a mom fighting for her daughter pic.twitter.com/CtFvI5C8WW
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Peters: You can read about a disease in a textbook 1,000 times, but when you meet a patient, it stays with you.
#NORDSummit2015 -
Portraits of Courage - to hear us will help us
@Jono_Lancaster#NORDSummit2015#MaddiesHerdpic.twitter.com/c4V98UkxZG
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Hanging out with
@Jono_Lancaster at#nordsummit2015. This guy gave an amazing talk this morning. pic.twitter.com/CJfHXs6uVE
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Closing of
#NORDSummit2015 with Dr. Janet Woodcock - many minds have opened up. pic.twitter.com/XLTh106aGl
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#Duchenne guidance a "good example in the important role patients...can play in developing new drugs” -@US_FDA Commissioner#NORDSummit2015 -
@RareDiseases We are so excited about#NORDSummit2015 tomorrow!#raredisease#NORDpic.twitter.com/UvmfHHZiaU
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@jennmcnary I spoke in front of a group of med students a few weeks back, about my rare disease w/ a positive response.#NORDSummit2015 -
"Rare diseases need recognition, research, and results" Stephen Ostroff MD,Acting Commissioner, FDA
#NORDSummit2015 -
#NORDSummit2015@MPSSociety@TaySachs Persistence and collaboration lead to success. Good to see our friends!pic.twitter.com/z7gjYZ2Le9
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Sachdev of
@VertexPharma: important for patient communities to have robust registries w/ natural history & burden of disease#NORDSummit2015 -
Heading to VA for
#NORDSummit2015 Should be a great meeting -
#NORDSummit2015 "at the end of the day, we are all patients" Jeffrey Sherman,MD, FACP, CMO & Vp R&D, Horizon Pharma -
New on
@Medscape#RareDiseases: Interview with Mike Watson of@TheACMG at#NORDSummit2015 http://wb.md/1HU3j4Z
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