Epidermolysis Bullosa
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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]
.
*
Indicates required field
Name
*
First
Last
Email
*
I am a
*
Individual with EB
Caregiver of an Individual with EB
Child's Name
*
First
Last
[object Object]
EB Type?
*
Where would you like to share your story?
*
Life with EB Blog (Website)
EBRP Social Media (Instagram, Facebook, LinkedIn, X)
Both
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.
WE WILL DO OUR BEST TO INCLUDE AS MANY IMAGES AS POSSIBLE AND SELECT THE HIGHEST-QUALITY ONES.
Upload a photo
*
Max file size: 20MB
Upload a photo
*
Max file size: 20MB
Upload a photo
*
Max file size: 20MB
Consent & Permissions
*
I give EBRP permission to share my story and any submitted materials on their website and/or social media.
I understand that my story may be edited for clarity, length, and formatting.
I would like to review the final version before it is published.
Is there anything else you would like to share?
*
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
If you select yes, we will be in touch
*
Yes
No
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.
Submit
Epidermolysis Bullosa
What is EB?
Life with EB
Resources
Research
Our Impact
Scientific Advisory Board
Clinical Trials
>
Filsuvez
Vyjuvek
ZEVASKYN
Town Halls
Apply for a Grant
Get Involved
Donate
Sponsor
EB Active
Events
The Effect
Shop
Give Cryptocurrency
Give Stocks
Give through Donor Advised Funds (DAF)
Accelerator Fund
Media
Matter of Time Film
Press
Videos
About Us
Our Mission
Financials
Venture Philanthropy
Supporter Spotlights
Leadership
>
Board of Directors
Staff
Donate