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Prikvačeni tweet
#ShowYourStripes with NORD at Rare Disease Day: Mission 2020! This DC-based event will be held on#RareDiseaseDay at the family-friendly and accessible-to-all@IntlSpyMuseum. Registration covers admission, lunch & a few surprises!
Register now: https://bit.ly/2PGlUIm pic.twitter.com/vN3QyU4f7d
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Great news for our partners
@CDKL5USA! A unique ICD-10 code is an important step toward improved recognition, ascertainment & research for the#CDKL5 community. More:https://bit.ly/2OoCOLUHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Everyone has his/her own stripes, the characteristics that make each individual distinct. While each of the 7,000+
#rarediseases are unique, there are many commonalities that unite patients, families & caregivers. Share your story for#RareDiseaseDay:https://rarediseases.org/shareyourstory/Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Join NORD at the 2020 World Orphan Drug Congress USA from April 29-May 1! The World
#OrphanDrug Congress is a global gathering of 1,500 attendees from 50 countries, w/ 350+ speakers & 260+ sessions covering all aspects of rare drug development & research. http://bit.ly/395CQAh pic.twitter.com/On7GPnxv54
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NORD is pleased to welcome
@AngiomaAlliance and@habc2016 as new members. Together we are strong!#angiomaalliance#brainsshouldntbleed#foundationtofighthabcpic.twitter.com/lgpGozaat4
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@healourskin invites you to join others affected by#pemphigus &#pemphigoid at the Chicago Support Group Meeting on February 15 at 1:00-4:00pm CST. Dermatologist Dr. Kyle Amber will be speaking & sharing info on these diseases. Register today:https://bit.ly/2SeVvCRHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
An essay by
#NORD's Peter L. Saltonstall on why corporate incentives in the#OrphanDrug Act should not be reduced or changed is featured in the Conquering#RareDiseases issue of Congressional Quarterly Researcher. Read here (subscription required):https://bit.ly/2GNmUGPHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
New NORD
#webinar on Thurs. 2/20 at 2:00pm: "Starting a Not-for-Profit Organization: You Can Do It, We Can Help!" Learn why and how to start a#nonprofit corporation from a legal expert and a NORD member patient advocacy organization. Register now: https://bit.ly/2GCEHQEHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
NORD is proud to unite member orgs under the Rare
#Cancer Coalition to push for progress by raising#rarecancer awareness and collaborating on issues facing the greater rare cancer community.#WorldCancerDay
pic.twitter.com/OtgMNNxc4E
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@bsyngap invites you to attend their 4th Annual SYNGAP1 Golf Classic & Silent Auction on 4/2 in Katy, TX. Your generous contribution will be used for life-changing programs that will benefit children with #rarediseases. More: https://bit.ly/2OoC6y2Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Share your rare journey by participating in a quick survey! NORD is conducting a 30 year follow-up survey to better understand the barriers & facilitators of
#raredisease diagnosis, care & treatment in the US to compare information over time. Take it now: https://bit.ly/2rsRmle pic.twitter.com/rL93OaOC2D
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The
@ChanZuckerberg Initiative has selected 30 patient groups to receive $450,000 each over two years to help advance research for#rarediseases. We are proud to announce that more than 50% of the selected organizations are NORD members. Read more:https://bit.ly/36VZlpEHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
New blog entry - Head of the Herd w/ Mike Morris, Co-Founder & President of
@tango2research! Mike's son was diagnosed w/#TANGO2 disorder in 2017 at 16 when whole exome sequencing identified TANGO2 deficiency as the root cause of his illness. More: https://bit.ly/37MSxMi pic.twitter.com/YJyfBEOZmX
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Today at 5:00p.m. EST our petition closes! Lend your name to help save our nation’s newborn screening program. We need as many signatures as possible urging
@SecAzar to restart the#NewbornScreening advisory committee.#RareAction Sign now:https://tinyurl.com/v8cu3h9Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
NORD member org
@remember_girls founder Taylor Kane will be hosting a signing of her new book, "Rare Like Us." Read more:https://www.gwhatchet.com/2020/01/27/alumna-rare-gw-founder-chronicles-her-fathers-rare-disease-in-book/ …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
“States have made a great deal of progress in supporting Americans living w/
#rarediseases. But there is still much more that needs to be done.” Read about the 5th Edition of the State of the States Report, released today by NORD & its#RareAction Network:https://bit.ly/2S6P5G1Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Today Sika Dunyoh, NORD Dir. of Education Programs, & Julie Raskin (
@congenitalhi) spoke at the#RareDisease Medical Publication & Digital Communication Planning Conference (@DynamicGlobalEv) on nonprofit initiatives to provide plain language publications & digital communicationspic.twitter.com/0QtJgA2q8u
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Only 24 hours left to sign the
#NewbornScreening petition urging@HHSGov@SecAzar to restart the#NewbornScreening advisory committee. With your help, we can resume this life-saving work.#RareAction Sign now: https://tinyurl.com/v8cu3h9 pic.twitter.com/o02cDKbbg3
Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
New NORD
#webinar on Thurs. 2/20 at 2:00pm: "Starting a Not-for-Profit Organization: You Can Do It, We Can Help!" Learn why and how to start a#nonprofit corporation from a legal expert and a NORD member patient advocacy organization. Register now: https://bit.ly/2GCEHQEHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
#ShowYourStripes on#RareDiseaseDay by sharing rare disease facts! Watch now:https://bit.ly/2uGMRF7Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
BREAKING NEWS: NORD joins 26 other patient orgs in opposing guidance released today on block grant funding of
#Medicaid that will reduce access to quality and affordable health care for#raredisease patients.#ProtectPatientsNow. Read more: https://bit.ly/3aVpM1YHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi
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