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Prikvačeni tweet
Registration is NOW OPEN for the 2020
#debraCareConference (DCC) on July 19-22 at the Omni Atlanta Hotel at CNN Center! For more info or to register, please visit: http://debra.org/DCC pic.twitter.com/bjQdYSRUkt
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Our friends at Pursuit for Patterson are offering one FULL financial scholarship to the
#debraCareConference (DCC) for a “first time attendee” family! Click below for more information.https://docs.google.com/document/d/1mIp_m_igGd55RA-NvS35UQCKx1VMFnJddQv2W87h8kA/edit …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
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@AbeonaBio is recruiting for the VIITAL Study, their Phase III Clinical Trial of EB-101 gene therapy for Recessive Dystrophic EB. More info: http://bit.ly/AbeonaEB101 pic.twitter.com/9FukQbuDfr
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For the 5th year in a row, debra of America received the highest possible rating of 4 stars from
@CharityNav, which means we're accountable, transparent, & financially healthy! We are proud to serve the EB Community.#WeFightEBpic.twitter.com/psILskmki9
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Joining our generous group of 2020 DCC Sponsors is Urgo Medical, maker of EB-friendly bandages! Meet members of the Urgo team in July at the DCC Exhibitor Hall. Reg for the 2020 DCC is open: http://debra.org/DCC DCC Sponsorship Opportunities: http://bit.ly/2020DCC-Sponsor pic.twitter.com/CXTP2BEC7P
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Robb Freed is 10K miles in on his 2nd cross-country cycling journey,
@TheBigRideforEB, to raise awareness & funds in memory of his son. He recently rode through Ocala, FL where he spoke with@OcalaStarBanner. Support Robb’s efforts: http://bit.ly/BigRideForEB https://www.ocala.com/news/20200201/man-cycles-through-marion-on-cross-country-trek-in-memory-of-son …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Did you know that there are 300 million people living with a rare disease worldwide? Together, we are strong and proud. Join debra of America in celebrating
#RareDiseaseDay on February 29! There are many ways to make your impact. Learn more at: http://debra.org/rare-disease-day …pic.twitter.com/0y1tQae6XT
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#TEAMDEBRA runners will be joining 44K athletes from across the globe in the Chicago Marathon this October! Get to know Stephanie Tavani, who is running in honor of her niece, Ellie, who lives with RDEB: http://bit.ly/2RYfLbP . More about TEAM DEBRA: http://debra.org/teamdebra pic.twitter.com/xuoIBo4CPk
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Go, Robb!
The funds he raises will go towards debra of America's mission. To support his efforts, please visit: http://bit.ly/bigrideforeb https://twitter.com/WCTV/status/1221130618836267010 …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Please join us in welcoming Nurse Emily Griffith to the debra of America team as our new EB Nurse Educator! She's available to answer questions & provide guidance to individuals w/ EB, their family members, the professional community, & the general public: http://debra.org/nurse pic.twitter.com/8SSYvNS0Bu
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Rebecca Bodan, Prof of Nursing at Cal State Fullerton & mom to a child with EB, takes an in-depth look at pediatric medical trauma and EB and emphasizes the importance of providing trauma-informed care to the population in a recently published article: http://bit.ly/2RjwqaB pic.twitter.com/yCbDyltb1A
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You’ll find that our new website is more user-friendly, while remaining a resource that the EB Community, our partners, & our supporters can count on! We're making final touches to ensure that you have access to the most up-to-date info on everything EB: http://debra.org pic.twitter.com/puCl6WEsAR
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debra of America proslijedio/la je Tweet
'The congress is well overdue. The incidence of epidermolysis bullosa is close to that of cystic fibrosis, yet it receives far less attention and funding'.
@ebworldcongress#EBWC2020#healthresearchmatters#cureEBpic.twitter.com/AXRs9LmrFl
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We're honored to be a part of the inaugural
@ebworldcongress this week in London!#EBWC2020 brings together the world’s leading experts in EB research, clinical management, & the EB Community. debra staff were also joined by Young Leadership Committee members, Hannah & Anjali!pic.twitter.com/tWMi4a9CNO
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U of M is looking for participants to complete a short anonymous survey to help discover how often children with EB successfully transition to adult care providers, and to identify barriers. If you are an adult w/ EB or a parent of a child w/ EB, visit: http://bit.ly/UofM-EB-Survey pic.twitter.com/lHq5tjZ3X0
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In true partnership with industry,
@amicusrx1, Dr. Anna Bruckner, debra ED Brett Kopelan & other experts show the challenges of living with the different types of EB. The info is taken from 156 survey responses from patients & caretakers. Read the article:https://ojrd.biomedcentral.com/articles/10.1186/s13023-019-1279-y …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Commit to your New Year’s
#fitness goals while supporting the EB Community by joining#TEAMDEBRA in one of these races: NYC Half Marathon, Cincinnati Flying Pig Marathon, TD Five Boro Bike Tour, or the iconic NYC Full Marathon! Please email teamdebra@debra.org to learn more.pic.twitter.com/RhWsOeOyVG
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@AbeonaBio has initiated their Pivotal Phase III#ClinicalTrial for EB-101 for the treatment of Recessive Dystrophic#EpidermolysisBullosa. Click below for more information. To learn more about the trial, please visit: http://abeonatherapeutics.com/clinical-trials/rdeb …https://investors.abeonatherapeutics.com/press-releases/detail/171/abeona-therapeutics-initiates-pivotal-phase-3-clinical …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
debra of America proslijedio/la je Tweet
We are pleased to have our CMO Dr. Mary Spellman share her insights on patient advocacy and industry relationships in
#raredisease during a panel moderated by@BrettKope of@debraOfAmerica tomorrow at the#Dermatology Summit in San Francisco. Learn more: http://www.dermsummit.com/2020/ds/Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
If you are a clinician supporting people living with EB and their families, we’d love to hear from you too: http://surveyhero.com/c/15be6cc4
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