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bullosa

Orig:http://img.youtube.com/vi/9W7kJDRcTDY/2.jpg

National...

Epidermolysis...

Orig:http://img.youtube.com/vi/J7XjjaC4JNk/2.jpg ES UN CORTO VIDEO DE REFLEXION

EPIDERMOLYSIS...

Orig:http://img.youtube.com/vi/obM1tVHJXUs/2.jpg Celebrities like Courtney Cox, Eva Longoria, Orlando Bloom, Jessica Simpson and Gwen Stefani chip in to raise awareness for Epidermolysis Bullosa and raise money to find a cure.
For more information about EB, please visit EB Info World at http://ebinfoworld.com

Epidermolysis...

Epidermolisis...

Resection of a...

alexa bullosa

Orig:http://img.youtube.com/vi/c2S-IV6oZ_E/2.jpg What is epidermolysis bullosa (EB)? How do EB patients live with such a devastating disease? What are the current treatments and research? Alfred Lane, MD, is a dermatologist at Lucile Packard Children's Hospital at Stanford and Professor and chair of the department of dermatology, at the Stanford University School of Medicine. In this March 20, 2008 video, Dr. Lane discusses

Alfred Lane, MD,...

Orig:http://img.youtube.com/vi/OkI53dQ8p94/2.jpg Epidermolysis Bullosa Awareness video.
For more information about EB, please visit
ebinfoworld.com

EB Awareness

Orig:http://img.youtube.com/vi/fAoawyoxVsg/2.jpg Lou Piniella hosted the EBAN fundraiser in January in Tampa Florida which benefits families dealing with the devastating skin disorder Epidermolysis Bullosa.
http://www.ebanusa.org

Lou's Gift to EB...

Orig:http://img.youtube.com/vi/cTU2lLb3dQ4/2.jpg Lou Piniella hosted the EBAN fundraiser in January in Tampa Florida which benefits families dealing with the devastating skin disorder Epidermolysis Bullosa.
http://www.ebanusa.org

Lou's Gift to EB...

Orig:http://img.youtube.com/vi/F3DvPwlFFtk/2.jpg An intimate look at one of the most frightening skin disorders known to man Epidermolysis Bullosa (EB) and the organization working to find a cure. We'll introduce you to three families fighting to save the lives of their children.

EB- Butterfly...

Orig:http://img.youtube.com/vi/8-JrwkDlLnU/2.jpg A memorial slideshow of Corey Lee Coil (10/18/92-8/22/07) who passed away due to complications of Epidermolysis Bullosa. Be free my son.

Farewell...

Orig:http://img.youtube.com/vi/WSFJLq_17Xo/2.jpg Its a rare and very painful skin disorder called Epidermolysis Bullosa. Its where the first and second layer of our skin isnt bonded so when friction comes in contact with our skin the fluid from our bodies form blisters...THERE IS NO CURE

SO PLEASE HELP SUPPORT AND SPREAD THE WORD..

JOIN MY GROUP PAGE ON MYSPACE..
groups.myspace.com/butterflichildren

FOR MORE INFO ABOUT E.B. GO TO:
http://www.debra.org
http://www.ebanusa.org/

My Lyfe..JOIN MY...

Orig:http://img.youtube.com/vi/9n_BGxWV5M4/2.jpg Epidermolysis Bullosa (EB) is a rare genetic skin disorder. EB is not contagious. People with EB are called Butterflies because their skin is as delicate as a Butterflies Wings. Their skin tears very easily and blisters are always present. In 2006 the US Government finally recognized EB as a condition which needs more attention and declared the last week of October from now on, National EB Awareness Week. To learn more about EB and how you might be able to help please visit www.debra.org and www.ebkids.org and see the facts. Please help!

Amazing Grace

Orig:http://img.youtube.com/vi/ngpplm2HiS4/2.jpg A family hopes to raise awareness for epidermolysis bullosa, a rare and painful skin disease that affects more than 12,000 Americans, including their son.

Family Raising...

Orig:http://img.youtube.com/vi/vHCTCikarsw/2.jpg An intimate look at one of the most frightening skin disorders known to man Epidermolysis Bullosa (EB) and the organization working to find a cure. We'll introduce you to three families fighting to save the lives of their children.

Eb - Butterfly...

Orig:http://img.youtube.com/vi/XKriLNdunLk/2.jpg Epi 4-10 EB Foundation
This week on Profiles In Caring, a look at one of the most frightening skin disorders known to man and the organization working to find a cure.
Epidermolysis Bullosa or EB causes blisters to form over much of the body surface of children. A recessive gene causes the disorder and both parents have to be carriers. Even then, only one in four of their children may actually get EB.
We'll introduce you to three families fighting to save the lives of their children while at the same time hoping researchers at Stanford University can find a cure Mothers 2 Mothers (south for this lethal disorder as soon as possible.
The emotions are high, the children so innocent and the parents so giving and caring. This is an episode you will not soon forget.

Eb - Butterfly...

Orig:http://img.youtube.com/vi/VLZ1OVIEabQ/2.jpg Kids with Epidermolysis Bullosa (EB) have to wear gauze their entire lives. Even a hug will tear their skin.

Wounds That Need...

Orig:http://img.youtube.com/vi/Ex7pALidkC8/2.jpg Geweldige dag met Sportwagens voor Epidermolysis Bullosa patienten en hun familie te Vught. Porsches, Lotussen, Corvettes, DeLorean, Mercedessen, Cobras, Fiat Spider, Opel Speedster, Nissan ZX350, Smart Roadster

EB Dag Vught 2008

Orig:http://img.youtube.com/vi/50l5XNhEHh4/2.jpg promoting awareness of EB (Epidermolysis Bullosa)

www.tatumebhope.org

Tatum's Journey...

Fireman Ian Swarr...

Orig:http://img.youtube.com/vi/Dmahlc6n9_A/2.jpg Jonny Kennedy died in 2003 aged 36. He had a terrible genetic condition called Dystrophic Epidermolysis Bullosa (EB) -- which meant that his skin literally fell off at the slightest touch, leaving his body covered in agonising sores and leading to a final fight against skin cancer.

In his last months Jonny decided to work with filmmaker Patrick Collerton to document his life and death, and the result was a film, first broadcast in March 2004, that was an uplifting, confounding and provocatively humorous story of a singular man. Not shying away from the grim reality of EB, the film was also a celebration of a life lived to the full.

When it was first shown, The Boy Whose Skin Fell Off captivated nearly 5 million viewers and helped to raise £500,000 for the EB charity DebRA. Channel 4 is re-screening the film and re-visiting Jonny's family to see how they have come to terms with his death and the public's reaction to the film.

Jonny was frank about his feelings on his upcoming death and practical about the arrangements. The film featured moving interviews with his friends and family, including his mother Edna, who had been his life-long carer and faced the prospect of Jonny's death with disarming mixed feelings, torn between relief for Jonny and knowing that she would miss him desperately.

The Boy Whose...

Orig:http://img.youtube.com/vi/1V0PW_61xKs/2.jpg Jonny Kennedy died in 2003 aged 36. He had a terrible genetic condition called Dystrophic Epidermolysis Bullosa (EB) -- which meant that his skin literally fell off at the slightest touch, leaving his body covered in agonising sores and leading to a final fight against skin cancer.

In his last months Jonny decided to work with filmmaker Patrick Collerton to document his life and death, and the result was a film, first broadcast in March 2004, that was an uplifting, confounding and provocatively humorous story of a singular man. Not shying away from the grim reality of EB, the film was also a celebration of a life lived to the full.

When it was first shown, The Boy Whose Skin Fell Off captivated nearly 5 million viewers and helped to raise £500,000 for the EB charity DebRA. Channel 4 is re-screening the film and re-visiting Jonny's family to see how they have come to terms with his death and the public's reaction to the film.

Jonny was frank about his feelings on his upcoming death and practical about the arrangements. The film featured moving interviews with his friends and family, including his mother Edna, who had been his life-long carer and faced the prospect of Jonny's death with disarming mixed feelings, torn between relief for Jonny and knowing that she would miss him desperately.

The Boy Whose...

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