About

Epidermolysis Bullosa (EB) is a rare genetic disease causing fragile skin and recurrent blister formations.  Individuals without EB have anchors between the two layers of their skin, the epidermis and the dermis.  Individuals with EB lack these critical anchors causing blisters due to the friction created when their two skin layers rub together.

Befriend EB was founded in honor of Rachel Nasuti.  Rachel was born in 1990 with Recessive Dystrophic Epidermolysis Bullosa.  Because there is not a cure or a medication that can help children like Rachel, befriend EB was founded on the premise that it would raise funds to provide tangible items to improve the everyday lives of children suffering from EB.

To read more about Befriend EB, please visit our website.

7 Comments Add your own

  • 1. Steve Thrasher  |  January 24, 2008 at 10:03 pm

    I have a 23 year old friend who has EB, and is living in poor conditions. I’m having a fund raiser for him, to get him some independance and better living conditions. The event is tentatively scheduled for the last weekend in March 2008. It will be held in Sonoma county, will feature two or three bands, and have some type of food available (Speghetti feed possibly). Any one who can help, please feel free to call me directly 707-548-2957- Steve T

  • 2. theresa jones  |  January 29, 2008 at 1:57 am

    hi iam 51 years old and i have eb. up until now i thought i was alone wth this disease until i saw the boy who skin fell off and learned about debra from the movie. i learned about u all from a another eb friend. i am so thrill to know their are other people that can relate to me people i can talk to and not feel ashame. mmy friend told me maybe u all can help me go the up coming conference in denver, i pray that u can i am so thrill . looking to hear from u soon.

  • 3. Cats123xo  |  February 19, 2008 at 7:57 pm

    theresa jones sorry it took so long to get back to you. I will check to see what i can do about denver.

  • 4. julie  |  February 20, 2008 at 1:02 am

    Our first ever annual Butterfly Ball is this Thursday, February 21, 2008. Needless to say, I have butterflies! I can’t wait to see everyone. Watch the website for pictures from the event.

  • 5. julie turner  |  February 27, 2008 at 2:13 am

    Our first annual Butterfly Ball was a great success! Thank you volunteers, sponsors, attendees, Marc Santia from TV4, Thom Muir from Sports Authentics and thank you to the EB families who could make it there. We are already planning for next year.

    It was nice to meet Anthony and his wife, too. They are an EB family we have never met before.

    I’m so grateful to everyone for everything; and I am sure I can say the same from the EB families.

  • 6. julie turner  |  February 27, 2008 at 2:14 am

    Who will be attending the conference in Denver? I will be flying in from Detroit with Laurie Foldi on Thursday night.

  • 7. bobby  |  April 6, 2008 at 11:20 pm

    uYwTAZ Hi! Nice site! Where is a add to favorite button& ;)
    http://www.mysite.com

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