Rezultati pretraživanja
  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!

  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:

  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! ❄🦋

  4. The amazing prints from Eddie Vedder’s are being packed as we speak and will be shipped next week! Thank you all so much for your support, donations, and patience. ❤️🦋🙏 to

  5. 29. sij

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

  6. 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:

  7. 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 ✨🦋💖

  8. 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 !

  9. 7. sij

    Thank you to everyone who made this possible and continues to stand with us to accelerate life-saving treatments and cures to .

  10. Here is your chance to own an incredible piece of memorabilia from this special night and help to ! All proceeds benefit . Find details at link below.

  11. 23. pro 2019.

    28. Covers, duets, guest spots, solo shows. 27. Love Boat Captain. 26. Red, red wine. 25. Iconic Rolling Stone Magazine ass-wipe. 24. Said this about Jeff: "He's not just a secret weapon--he's an atomic bomb." 23. 23 22. Wants to and 21. Fanboys The Who.

  12. 3. pro 2019.

    . Banking is an annual Silver Sponsor. EBRP is a research fund aimed at treating & ultimately curing Epidermolysis Bullosa (EB). On , Support the causes that matter to you most!

  13. 27. lis 2019.

    Epidermolysis bullosa is ‘Hard to say. Hell to live with.’ We’re raising awareness and funds for research to . Please visit our website and get involved during 🦋

  14. We envision a world where individuals with EB won't have to wrap their wounds in bandages any longer. This , make it a point to tell someone about EB and how they can get involved in our mission to find treatments and cures. Together, we will 🦋

  15. 24. lis 2019.

    Patients like Eli and their families living with are inspiring. Join us during National Awareness Week on October 25-31 to raise awareness and support the EB community ,

  16. Rock4EB! was an unforgettable evening with , , and that raised over $900,000 for life-saving . Thank you to all who supported this fantastic event that benefited ours and 's efforts to 🦋✨❤️

  17. 7. lis 2019.

    Last night invited his two young daughters on stage to perform a Taylor Swift song at a benefit concert for Epidermolysis Bullosa. is what my son Ermias was born with some 7 years ago.

  18. 7. lis 2019.

    "moonfrye - One of the greatest nights with these incredibly inspiring friends. I love you and all the incredible work you are doing to . Eddie & SO brilliant! "

  19. 30. ruj 2019.

    This little guy was excited to see that the butterflies have migrated all the way here to a Toledo, Ohio...and they even flew here in the “A” formation 😀

  20. 18. ruj 2019.

    Looking forward to attending another year of Action for Jackson and supporting

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