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EB Connect is a private online platform for the global Epidermolysis Bullosa (EB) Community. People living with EB, their family members, EB researchers, medical professionals and industry partners are invited to join this innovative platform!

Member benefits:

  • Find and connect with others with EB through an Interactive Map, searchable by EB type, connection to EB (self, mom, dad, etc.) and more.
  • Access a wide range of educational videos on EB care, management, and research.
  • Attend fun online meetups throughout the year!
  • Engage directly with the companies developing treatments for EB.
  • Join specialized groups for EB type, age ranges, and more.

Click the button below to create your FREE profile and be a part of a global online community of people living with and working in EB. 

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Community-Led Online Meetups

Mom and Son

New to 2022, debra of America will be holding meetups for the EB Community! These meetups will take place online and are led by members of the EB Community

They are meant as a safe space for those impacted by EB to connect with each other, share personal experiences and knowledge, and give and receive support. 

Register for these meetups through EB Connect. 

Have an existing account? Sign In Here

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Up Next:

Moms Meetup: Parenting a Child with EB

Thursday, February 3, 2022 | 6:30pm ET

Meet and support other moms of kids and adults who live with Epidermolysis Bullosa (EB)! Join us virtually on Thursday, February 3rd at 6:30pm ET for Moms Meetup: Parenting a Child with EB led by EB Community member, Jennifer Garland. Jennifer is a loving mother to Cole, a 16-year-old boy living with Recessive Dystrophic EB (RDEB). 

This Online Meetup is a judgement-free zone. Share your stories, find advice, give support and make new friends! All mothers of children with EB, of any age, are welcome.

Register Now


Coming Soon:

EB Women's Morning Meetup: Coffee & Conversation

Saturday, March 26, 2022 | 1:00pm ET

Get together with women living with Epidermolysis Bullosa (EB) for coffee and conversation! Grab a cup of joe and join us on Saturday, March 26th at 1pm ET for an Online Meetup led by EB Community member, Shirvani Naran, who lives with Recessive Dystrophic EB (RDEB). Create new connections, share your personal experiences, and find and give support with other amazing women living with EB.

This Online Meetup is a judgement-free zone. All adult women (21+), living with EB, are welcome!

Register Now 


EB Men's Meetup: Virtual Happy Hour

Thursday, April 28, 2022 | 6:30pm ET

Men living with EB: let's get together for some post-work drinks and conversation! Grab your favorite beverage and join us on Thursday, April 28th at 6:30pm ET for a online meetup led by EB Community Member, Andrew Conrad, who lives with Recessive Dystrophic EB  (RDEB). This Online Meetup is a great opportunity to connect with other men living with Epidermolysis Bullosa (EB), share your personal stories, find advice, and give support.

This Online Meetup is a judgement-free zone. All adult men (21+) living with EB are welcome!

Register Now