EB Research Partnership

@EBResearch

EB Research Partnership funds research aimed at treating and curing Epidermolysis Bullosa (EB). 👋 🦋 🔬 Find a cure

Vrijeme pridruživanja: lipanj 2013.

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  1. is truly an inspiration. Despite EB's constant nagging, she's currently cancer-free🙌, has her own freelance business as an independent artist🎨, and acts as a global EB advocate🌎. Way to go, Deanna!

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  2. 4. velj

    EBRP CEO is speaking at in Houston today on our work with to leverage data to . Click here to register and view the livestream:

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  3. 3. velj

    In just 3 years, has evolved from a hometown fundraiser to an international event. covers the inspiration behind the Plunge, the wonderful women who organize it, and how YOU can get involved! ❄🦋

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  4. 31. sij

    EBRP CEO will be speaking at 12pm ET on ' "Patient Organizations As Research and Data Partners" Webinar along with & . Register at ! 🔬🧪

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  5. 29. sij

    We partnered with & to bring John Hudson's song to life with and are excited to share the awesome results!

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  6. 23. sij

    Tickets are on sale for the 4th Annual on March 29 in Houston! Join us & our friend for a day of family fun at with live music, food, drinks, a silent auction, & kids entertainment. Purchase your tickets or make a donation today!

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  7. 22. sij

    As a partner at , EBRP CEO is speaking today our initiative to leverage data to . Learn more from Michael & EBRP Co-Founder & Vice Chair Jill Vedder's keynote at 's Conference last summer:

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  8. 21. sij

    Get ready to ! We have 4 locations in the USA, so find the event closest to you and join us on 3/7 and 3/8: 📍Wellesley, MA 📍Staten Island, NY 📍San Francisco, CA 📍Old Greenwich, CT Click to learn more & donate to ✨🦋💖

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  9. 17. sij

    "Where there is life, there is hope" says Silvia, Nicky's mom, on her hope for a future without EB. Nicky is 23 years old and lives with RDEB. Read his full profile to learn more ✨🦋💪❤️

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  10. proslijedio/la je Tweet
    16. sij

    Join for our first webinar of 2020, on Patient Organizations As Research and Data Partners! Thrilled to feature work of Todd Sherer , & . Register now:

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  11. 14. sij

    ✨Great News✨ has initiated its Phase 3 clinical trial for EB-101, their gene therapy candidate for treatment of RDEB! This joins 's Oleogel-S10 study as the only in EB. Progress on the path to !

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  12. 13. sij

    Here's your chance! Sign up to join for the on March 15. Get started on those by getting in shape AND raising money for . Send us a message to sign up today! 🏃‍♀️🏃‍♂️💨

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  13. 10. sij

    Calling all individuals with EB and parents! We want to share your stories to give supporters a glimpse of life with EB. Fill out the form at the link below to sign up for our program. A member of our team will be in touch. Can't wait to hear from you! 🌟🦋

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  14. 9. sij

    Leo is the ! Whether they’re playing Rock ‘Em Sock ‘Em Robots or racing cars, Leo is always watching out for his little brother Brady. His biggest wish: to see Brady cured of EB. Visit to help make EB a thing of the past 💖🦋

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  15. 8. sij

    We hope 2020 treats you as well as the 🍰dessert bar🍭 treated Eli at our fall gala this year! Our events calendar is set for Q1 with (3/7 & 3/8), the 2020 NYC Half Marathon (3/15), and Believe in Brady (3/29). Save the dates and get involved! ✨🎉

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  16. 7. sij

    Every EB patient is different and ALL deserve treatments and cures. We strive to fund diverse research techniques for all types of EB. Some are even specific to the exact location of a patient's personal genetic . We're excited to fund more innovation in 2020! 🔬🧪👩‍🔬

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  17. 6. sij

    . honored Dr. Karen Wiss as a Patient Care Hero for her work with Jonathan Gionfriddo, a patient who lives with RDEB. EBRP proudly funds Dr. Wiss's EB Clinic as part of our EB Clinical Research Consortium (EBCRC). Congrats Dr. Wiss!🏅🌟

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  18. 3. sij

    In 2019, we funded research at 28 centers in 6 countries. The deadline for our first grants cycle of 2020 is January 15 at 11:59pm EST. Click the link to learn how to submit your research proposal to ! 🧬🔬🧪

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  19. 2. sij

    We broke our records in 2019, spending $5.5 million on 21 research projects - both the largest amount of money and number of projects we've ever funded. We're excited to continue working hard and breaking records in 2020. Join us in our mission to ! 🌟🎉

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  20. Happy Birthday EBRP Co-Founder of ! His love for the EB community & dedication to find treatments & cures has amplified our mission worldwide, raising awareness & funds to . Thank you for your relentless support.🎉🦋❤🤘

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