is a rare, and often devastating, genetic disease that has been designated an orphan indication by the U.
Zorblisa is currently in late stage development for the treatment of skin blistering and lesions associated with Epidermolysis Bullosa
(EB), a rare orphan pediatric disease.
Jonny Kennedy, 36, of Alnwick, was crippled by constant pain by the incurable skin disease, epidermolysis bullosa
Half will go towards helping youngsters like Alex, who has the rare condition dystrophic epidermolysis bullosa
The two-year grant will be utilized for RegeneRx's Phase II Epidermolysis Bullosa
(EB) clinical trial, which is currently enrolling patients.
has received the designation of Orphan Drug by US FDA for using AC-201 to treat epidermolysis bullosa
Jonny, of Alnwick, who suffered from rare skin disorder epidermolysis bullosa
(EB), was the subject of a documentary which followed the final days of his life.
Alex Hood constantly endures blisters because of epidermolysis bullosa
, an illness so severe that her parents Virginia and Robin have never been able to cuddle her.
Cox's first-year duties included promotional events and personal appearances, including a charity event for the Epidermolysis Bullosa
Medical Research Foundation that RPMC helped coordinate.
1, 2014 /PRNewswire/ -- The Jackson Gabriel Silver Foundation and Heal EB announced today a merger of their organizations to form the EB Research Partnership (EBRP), creating the largest non-profit organization dedicated solely to funding research to cure Epidermolysis Bullosa
His life coping with Epidermolysis Bullosa
, known as EB, was shown in Channel 4 documentary The Boy Whose Skin Fell Off in March, and the programme is to be repeated next Monday.
Parents Terry and Rachael need to raise pounds 30,000 to build a unit in their home with equipment for Amy, who has epidermolysis bullosa
which causes her skin to constantly blister.