debra of AmericaOvjeren akaunt

@debraOfAmerica

We fight Epidermolysis Bullosa (EB), "the worst disease you've never heard of"

New York
Vrijeme pridruživanja: rujan 2011.

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  1. Prikvačeni tweet

    Registration is NOW OPEN for the 2020 (DCC) on July 19-22 at the Omni Atlanta Hotel at CNN Center! For more info or to register, please visit:

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  2. Our friends at Pursuit for Patterson are offering one FULL financial scholarship to the (DCC) for a “first time attendee” family! Click below for more information.

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  3. . is recruiting for the VIITAL Study, their Phase III Clinical Trial of EB-101 gene therapy for Recessive Dystrophic EB. More info:

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  4. For the 5th year in a row, debra of America received the highest possible rating of 4 stars from , which means we're accountable, transparent, & financially healthy! We are proud to serve the EB Community.

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  5. 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: DCC Sponsorship Opportunities:

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  6. Robb Freed is 10K miles in on his 2nd cross-country cycling journey, , to raise awareness & funds in memory of his son. He recently rode through Ocala, FL where he spoke with . Support Robb’s efforts:

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  7. 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 on February 29! There are many ways to make your impact. Learn more at:

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  8. 7 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: . More about TEAM DEBRA:

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  9. Go, Robb!🥳The funds he raises will go towards debra of America's mission. To support his efforts, please visit:

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  10. 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:

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  11. 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:

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  12. 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:

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  13. 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'.

    , , i još njih 3
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  14. We're honored to be a part of the inaugural this week in London! 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!

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  15. 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:

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  16. In true partnership with industry, , 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:

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  17. Commit to your New Year’s goals while supporting the EB Community by joining 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.

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  18. . has initiated their Pivotal Phase III for EB-101 for the treatment of Recessive Dystrophic . Click below for more information. To learn more about the trial, please visit:

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  19. proslijedio/la je Tweet
    11. sij

    We are pleased to have our CMO Dr. Mary Spellman share her insights on patient advocacy and industry relationships in during a panel moderated by of tomorrow at the Summit in San Francisco. Learn more:

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  20. If you are a clinician supporting people living with EB and their families, we’d love to hear from you too:

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