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Glen O’Neill from Cure Sanfilippo Foundation talks about the Caregiver Preference Study
@CureSanfilippo#RareDiseaseSummit pic.twitter.com/7oyzmQTOGG
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Thrilled to be here at the Rare Disease Innovation & Partnering Summit!
@EBDgroup@GlobalGenes@MassBio@CureCMT4J@CureSanfilippoF@girlschronical1@alliancerm#rarediseasesummit pic.twitter.com/oXC95I5gxi
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Proud to be part of the
#RareDiseaseSummit here in Boston. Sharing ideas with leaders in the rare disease space#innovationpic.twitter.com/GQHdQhPxs8 – mjesto: Boston Marriott Long Wharf
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@RaremarkHealth#rarediseasesummit - great to see patients on stage opening this conf in Boston: that’s a first! pic.twitter.com/fRrHMzqW2A
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“As we move towards curative treatments in
#raredisease, will see shift in value... while FDA approval was big investor risk 5yrs ago, today that has shifted to pricing/reimbursement.”@cngarabedian Great discussion @#RareDiseaseSummit pic.twitter.com/SU51TrPyoL
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We’ll be there! Our founder Rich will be a panelist on the Science Luminaries Keynote Thursday morning!
#RareDiseaseSummit https://twitter.com/GlobalGenes/status/1137736453037973505 … -
Rich will be on the Science Luminaries Keynote tomorrow at the
#rarediseasesummit See you there! https://ebdgroup.knect365.com/rare-disease-summit/speakers/richard-horgan …pic.twitter.com/OdBEPOiFfq
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Looking forward to our VP of patient advocacy and engagement Irene Aquino (
@MissIreneAquino) presenting at June’s Rare Disease Innovation and Partnering Summit. She’ll be sharing insights on the patient and caregiver journey. https://bit.ly/2vzpSc9#RareDiseaseSummit pic.twitter.com/KgXFeMhOcT
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Excited to be at the
#RareDiseaseSummit in Boston today! Give us a shoutout if you're here and want to meet up :) -
Enjoyed hearing from the patient perspectives panel!
#Patientengagement is key#RareDiseaseSummit https://twitter.com/CheckRare/status/1139259332225355784 …
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Bo Bigelow co-founder of the Rare Disease Film Festival introduces the Foundation for USP7-Related Diseases.
#RareDiseaseSummit@RareDiseaseFilm@bobigelow@FoundationUSP7pic.twitter.com/uMP7HKMM0l
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Great to see
@Amyloidosis_ARC being represented by@i_lousada at this year’s#RareDiseaseSummit! https://twitter.com/Amyloidosis_ARC/status/1139204155824844800 … -
Attending this year’s
#RareDiseaseSummit in Boston from June 13-14? Catch our Chairman and CEO,@cngarabedian, as a panelist on the Focus on Funding Panel & as the chair for the Partnering & Investment Track during the conference. Learn more: http://bit.ly/2Hxu2bn#rarediseasepic.twitter.com/c9KuR3krCj
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Honored to be part of the Rare Disease Summit this year. Please reach out if you plan on attending in Boston this June! More information on my content to follow.
#RareDiseaseSummit. https://lnkd.in/e-8D_9d -
Dr Beggs from Boston Children’s Hospital discusses X Linked Myotubular Myopathy
#RareDiseaseSummit pic.twitter.com/EYthjxHa5k
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Earlier today, Alexion’s Martine Zimmermann joined a distinguished panel of experts at the
#RareDiseaseSummit to discuss how internal and external partnering is fundamental in the field of rare diseases.#RareDiseaseSummit pic.twitter.com/r04IFyB0IR
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Alexion’s Martine Zimmermann, Wendy Erler and John Reynders will be representing Alexion at this year’s
#RareDiseaseSummit, which kicks off today and will focus on partnering and innovation in rare diseases. pic.twitter.com/qCCNknILsX
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Mapping the patient journey is crucial to the identification & diagnosis of a rare disease. Our VP of Patient Engagement & Advocacy
@MissIreneAquino shared insights from her efforts in rare genetic disorders of#obesity at the#RareDiseaseSummit. pic.twitter.com/ySSsaPeR9v
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Mary McGowan from
@TheMyositisAssc and Lindsey Smith from@CorbusPharma catching up before the#rarediseasesummit.#dermatomyositis#Myositis#MyTMApic.twitter.com/XhytY4SvJ2
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First panel at
#RareDiseaseSummit emphasizes the critical role and influential voice of an individual living with a#raredisease within the rare disease paradigm. So glad to see@GlobalGenes,@CureCMT4J,@bobigelow,@CureSanfilippoF &@girlschronical1 on the stage!pic.twitter.com/w8ZWVds3qF
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