According to a story from pm360online.com, the gene therapy company Fibrocell Science, Inc., recently received an investment of $900,000 from the Epidermolysis Bullosa Medical Research Foundation (EBMRF) and the EB…
According to a story from PR Newswire, the biopharmaceutical company Constant Pharmaceuticals recently announced that it plans to develop its experimental compound TXA127 as a therapy for epidermolysis bullosa (EB).…
This event will be an opportunity for epidermyolsis bullosa patients and their families to network with one another. Participants will also be able to learn about the latest in epidermyolsis…
While she's constantly smiling and full of energy, little girl Makenzie Cadmus struggles with a rare condition known as epidermolysis bullosa, reports News 12 Long Island. The rare disease has…
Two years ago, a seven-year-old boy from Syria was in dire condition. 80% of his skin was gone; his entire body covered in wounds and abrasions. He still had some…
A health crisis—just like epidermolysis bullosa (EB)—is different for everyone. But, most have one thing in common: Bad news blindsides us. We take a hit—a hard one at that. When…
Who is excited for another long weekend coming up this Monday?! To kick off your three-day weekend, take a look at these intriguing stories... Researchers have identified a superbug that…
When we need it most, stories can inspire, encourage, and quite frankly, make us feel good. Especially if the story is about a super cute little eight-year-old girl who was…
Epidermolysis bullosa (EB) is a disorder characterized by blistering of the skin. It also affects all the body's mucous membranes, so while the blisters may be visible, the person's lips, tongue, mouth,…
I always have a knee-jerk reaction that borders on anger when I read about babies who are dealt an unfair hand in the rare disease world. It seems incredibly unfair…
Epidermolysis Bullosa, or EB, is a connective tissue disorder that approximately 200 babies are born with each year. The most serious symptom is the extreme fragility of skin. People with EB suffer…
Pictured: Dr. Jakub Tolar EB can make a lot of daily activities difficult and painful. Check out some tips and tricks compiled from presentations at the 2016 Debra CARE Conference.…
Can I just tell you how I tired I am of all the millennial hate out there? People are beyond harsh to the younger generations, and this article on Heritage High…
The Dystrophic Epidermolysis Bullosa Research Association of America (Debra) describes EB as "The Worst Disease You've Never Heard Of". It's a painful disease without a cure and it's rarity makes…
Have a rare disease? Have you ever been to a national patient conference? These are invaluable opportunities to connect with others who share your challenges and concerns! Imagine being in…
Kids diagnosed with EB, or Epidermolysis Bullosa, have skin as fragile as a butterfly’s wings. DEBRA stands for Dystrophic Epidermolysis Bullosa Research Association, the patients association for this fragile skin disorder which…
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