Life with EB

    Fill out the form below if you're interested in sharing yours or your child's story with EBRP. Our Life with EB Stories are featured on our website and/or social media channels. 

    For examples of Life with EB stories, please visit ebresearch.org/life-with-eb

    If you are interested in recording a video story for EBRP to share on their socials, please reach out to [email protected]. 
    FOR THE LIFE WITH EB BLOG, YOU CAN EITHER WRITE YOUR OWN STORY OR HAVE AN EBRP TEAM MEMBER CRAFT IT FOR YOU. IF YOU’D LIKE OUR TEAM TO WRITE IT, USE THE SPACE BELOW TO SHARE KEY DETAILS—BULLET POINTS ARE WELCOME!

    FOR EBRP SOCIAL MEDIA, WE WILL HIGHLIGHT IMPACTFUL QUOTES AND KEY MOMENTS FROM YOUR STORY TO SHARE WITH OUR COMMUNITY.

    NEED INSPIRATION? VISIT EBRESEARCH.ORG/LIFE-WITH-EB TO SEE HOW OTHERS HAVE SHARED THEIR JOURNEYS.
    YOU’RE WELCOME TO INCLUDE DETAILS SUCH AS:
    • YOUR OR YOUR CHILD'S EB DIAGNOSIS
    • DAILY LIFE: CHALLENGES, TRIUMPHS, PASSIONS, HOBBIES, ETC.
    • EXPERIENCES WITH CLINICAL TRIALS & TREATMENTS
    • WHAT YOU WISH MORE PEOPLE KNEW ABOUT EB
    • A MESSAGE YOU’D LIKE TO SHARE WITH THE EB COMMUNITY
    IF YOU ARE SHARING YOUR STORY ON OUR LIFE WITH EB PAGE, PLEASE UPLOAD AT MINIMUM 1 PHOTO ALTHOUGH MORE ARE ALWAYS WELCOME!

    IF YOU ARE SHARING YOUR STORY ON EBRP SOCIALS WE RECOMMEND AT MINIMUM 2 PHOTOS, BUT WELCOME MORE.
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    WE WILL DO OUR BEST TO INCLUDE AS MANY IMAGES AS POSSIBLE AND SELECT THE HIGHEST-QUALITY ONES.
    Max file size: 20MB
    Max file size: 20MB
    Max file size: 20MB
    ARE YOU INTERESTED IN FILMING A VIDEO STORY FOR EBRP TO SHARE ON SOCIAL MEDIA? THIS WOULD INVOLVE A 30-MINUTE ZOOM MEETING WITH AN EBRP TEAM MEMBER, WHERE WE WILL SCREEN RECORD AND INVITE YOU TO SHARE YOUR STORY. WE WILL THEN EDIT THE FOOTAGE INTO CLIPS FOR SOCIAL MEDIA
    THANK YOU FOR TAKING THE TIME TO SHARE YOUR STORY WITH US! YOUR VOICE HELPS RAISE AWARENESS AND INSPIRE ACTION!

    WE WILL BE IN TOUCH WHEN YOUR STORY IS READY TO GO PUBLIC.

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