An article from Medscape highlighted recent advances in treatment that are reshaping the clinical approach to epidermolysis bullosa (EB), transitioning care from largely supportive management to therapies that address genetic…
Mesenchymal stromal cells (MSCs) have tantalized the medical world for years. These versatile immune-modulating cells offer genuine hope for diseases ranging from epidermolysis bullosa, a genetic disorder where skin tears…
A major breakthrough for the 300 Irish patients living with butterfly skin. For the first time in Ireland, patients battling epidermolysis bullosa, a rare and devastating skin condition, now have…
This patient story is sponsored by Chiesi Global Rare Diseases and is promoted through the Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing…
As reported on PM Live, a new clinical trial hub focused on epidermolysis bullosa (EB) has been established at University Medical Center Groningen (UMCG) in the Netherlands through a collaboration…
A recent milestone in gene therapy is transforming the outlook for people with rare genetic skin disorders, signaling a new era of personalized medicine and hope for patients who previously…
For families affected by rare genetic skin diseases, hope once meant daily bandages and vigilant wound care. That began to change in 2023, when US regulators approved the first-ever gene…
A significant step forward in the treatment of a rare and painful skin condition has emerged from Finland. According to News Medical Life Sciences, Tampere University has announced the licensing…
Epidermolysis Bullosa (EB) is a devastating and rare genetic skin disorder often described as having "butterfly skin." For those living with EB, even the gentlest touch can lead to painful…
In North Texas, a remarkable young girl named Isabella "Izzy" Esquivel has found a unique way to experience happiness and self-expression—through her art. Izzy, now ten years old, was diagnosed…
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…
© Copyright 2024 Patient Worthy
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
