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@RareDiseases presents informative panel on Social Media and Technology Platforms for Organizing Patients at#NORDSummit. Social media is wonderful tool to educate & build a patient community, however, security protocol is needed to protect personal/health info.#CureFApic.twitter.com/SS8x3vICqY
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Access to and coverage for expanded
#carrierscreening can be a critical piece in helping families avoid a diagnostic odyssey -@aishuarjun#nordsummit@RareDiseasespic.twitter.com/IxQvK3Nipf
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One thing I was glad to see at the
#NORDSummit was a diverse array of speakers. I don’t think I saw a#manel at any of the sessions I attended. Kudos to@RareDiseases for their commitment to broad representation.pic.twitter.com/emcXE1jEw2
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“We can’t leave any patient behind, especially patients with rare diseases.” Dr. Ned Sharpless, MD, FDA Acting Commissioner
#NORDSummit -
We need to be able to measure impact across our areas to make change, who is with me?
#NORDSummit#adventureruthie#theneedtoshareinformationisgreat#pinksockshttps://twitter.com/RarePOV/status/1186686592926322688 … -
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KAT6A mom, Dr. Natacha Esber, will be speaking at
#NordSummit. Natacha is a physician and the director of science and research at the KAT6A Foundation. Her topic that is near and dear to her is “Our KAT6A Journey, From 1 Patient to an International Organization". See you there! pic.twitter.com/NAyvHa2IbS
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Empowered women empower women! Thanks for your support
@lseiders3
#NORDSummit#StrongerTogether#RareLikeUs#RememberTheGirlspic.twitter.com/i1bXxYWY9T
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On-site reporting of the 2019
#NORDSummit for@MDMagazine and@RareDR.pic.twitter.com/lFLztSsUvH – mjesto: Washington Marriott Wardman Park
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Thank you
@RareDiseases for hosting me today to address access to breakthrough innovations for those confronting rare diseases#NORDSummit pic.twitter.com/RfXCfeuDuA
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There I am again, sitting in the background - these ladies were a hoot / smart all over the
#NordSummit this year. https://twitter.com/macroptero/status/1186844571839488000 …
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Panel discussion on data protection and social media. №1 target abuse is health insurance number. In Europe it's social security number and date of birth. Be aware of what you post!
#NORDsummit pic.twitter.com/gxKoMMghz5
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25-30 million Americans are living with rare diseases. Theresa Mullin of the FDA talks about the Rare Disease Cures Accelerator which will provide infrastructure to get cures through to patients more quickly.
#NORDSummit pic.twitter.com/xq8G4G5P7u
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I was privileged to speak at the
#NORDSummit this morning on the work the FDA is doing to support rare disease product development. https://go.usa.gov/xpcr3 pic.twitter.com/CEUcCgU6QZ
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Congratulations to the Najm brothers who are in DC today for the
#NORDSummit . They had two posters accepted for presentation at the conference: My Journey From Autism to KAT6A by Peter Najm, and KAT6A Syndrome Explained by a Sibling, by Paul and John Najm.#KAT6Asyndromepic.twitter.com/DihZOILg48
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Lunch and Learn: Our KAT6A journey, from 1 patient to an international organization presented by Natacha Esber, MD, Science and Research Director
@KAT6Afoundation#NORDSummit@RareDiseasespic.twitter.com/f8Oz6nTCXp – mjesto: Washington Marriott Wardman Park
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FDA is looking for patients and caregivers attending
#NORDSummit 2019 to sit for a photo portrait session. Stop by Booth 210 if you’d like a complimentary digital photo portrait and are willing to be featured in FDA and NORD communications about rare diseases. -
Did you miss
@CasianaGonzalez and@julianhalmai presenting our#epigenetic editing research at#NORDSummit? Poster presentations continue tomorrow! Stop by poster 13 to chat with Casiana about#Rett + Poster 8 with Julian for#CDKL5.pic.twitter.com/qYj8rHgbmz
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Inspiring, honest opening keynote at
@RareDiseases#NORDSummit by@TJBichell. ‘The promoter of the grit gene is caffeine’#lucktakesgrit -
Apropos of the upcoming breakout session on social media in rare disease patient communities, this article focuses on the increased sharing of the latest research discoveries in the MPN scientific community to speed up cures.
#NORDSummit https://twitter.com/doctorpemm/status/1185909283306856448 …
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