According to a story from VICE News, Congressman George Santos was recently elected to Congress in the 2022 mid-term elections. Since then, his past has been placed under scrutiny, and…
Within 48 hours following her son Kylan's birth, Emily Bussenschutt had already visited three separate hospitals searching for a diagnosis. 9Honey explains that Kylan was born with epidermolysis bullosa…
CONTENT WARNING: Severe skin wounds and damage Working in rare disease is always hard- It means working in suffering and grief, but even with all our experience, we had to…
In early June 2021, Epidermolysis Bullosa News reported that Filsuvez (Oleogel-S10), a topical gel for epidermolysis bullosa (EB), received Priority Review designation from the FDA. Filsuvez Developed by Amryt Pharma,…
My name is Adam Nelson. I am 33 years old and I was born with a rare genetic connective tissue disorder known as epidermolysis bullosa simplex (EBS) of the Weber-Cockayne…
In a recent press release, clinical-stage biopharmaceutical company Abeona Therapeutics Inc. ("Abeona") shared that the company had a successful Type B meeting with the FDA. During the meeting, Abeona explained…
By Danielle Bradshaw from In The Cloud Copy 19-year-old Marky Jaquez’s feet have never touched the ground because the sensitive skin of his soles would tear away. As such, he…
The human spirit can be a remarkable force. Robb Freed cycled thousands of miles by himself to raise awareness for epidermolysis bullosa (EB) -- a rare illness that took the…
According to a story from prnewswire.com, the biopharmaceutical company InMed Pharmaceuticals, Inc. has recently announced that that company's Clinical Trial Application has been approved in the Netherlands. This approval will…
According to a story from The Squamish Chief, mother Emily Tomlinson is amazed by the capabilities of her three year old son Nash Smillie. Nash was born with a severe…
Rare diseases often lack a voice. Unlike more common diseases, they do not have big movements that bring the disease awareness through fundraisers, 5Ks, and spokespeople. However, sometimes, celebrities have…
Epidermolysis Bullosa Epidermolysis bullosa (EB) is a rare condition affecting approximately 500,000 individuals globally. Patients in the United States and Europe account for 50,000 of these individuals. The hereditary condition is…
According to a story from Market Screener, the drug developer RegeneRx Biopharmaceuticals, Inc. has recently announced that its licensee for RGN-137, an experimental wound healing gel, has begun the dosing…
Epidermolysis Bullosa Epidermolysis Bullosa (EB) refers to a group of rare conditions which are characterized by fragile skin. Basically, the disease is caused by separation between the layers of the skin.…
According to a story from Debra of America, a new Phase 1 clinical trial being operated by Stanford University is currently recruiting participants. This trial will be a test of…
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…
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