HUGE NEWS!
The FDA announced their approval of FILSUVEZ® (birch triterpenes), a topical gel for the treatment of partial thickness wounds in patients 6 months and older with Junctional Epidermolysis Bullosa (JEB) and Dystrophic Epidermolysis Bullosa (DEB). FILSUVEZ is the first approved treatment for wounds associated with JEB, a rare, moderate-to-severe form of EB with blisters beginning in infancy. FILSUVEZ is administered at home, allowing for integration into existing treatment routines. FILSUVEZ is applied topically to the wound at each dressing change.
"This is an important milestone for families who live with EB every day. This approval is the result of the combined efforts of researchers, patients and their families, EB advocacy organizations, health care professionals and Chiesi Global Rare Diseases," Giacomo Chiesi, Head of Chiesi Global Rare Diseases, said. "I would like to recognize the dedication shown by many people and organizations on this journey to develop Filsuvez® and I am grateful to the EB Research Partnership for your ongoing support. We are both appreciative and humbled by the commitment and perseverance of patients and families who took part in the EASE (Oleogel-S10 ) clinical trial, without whose participation we would not have achieved this remarkable result."
"This is an important milestone for families who live with EB every day. This approval is the result of the combined efforts of researchers, patients and their families, EB advocacy organizations, health care professionals and Chiesi Global Rare Diseases," Giacomo Chiesi, Head of Chiesi Global Rare Diseases, said. "I would like to recognize the dedication shown by many people and organizations on this journey to develop Filsuvez® and I am grateful to the EB Research Partnership for your ongoing support. We are both appreciative and humbled by the commitment and perseverance of patients and families who took part in the EASE (Oleogel-S10 ) clinical trial, without whose participation we would not have achieved this remarkable result."
FILSUVEZ FRIENDS
FILSUVEZ Friends is a mentorship program that connects people who are using FILSUVEZ, as well as caregivers supporting a loved one with dystrophic or junctional EB, with others who have similar experiences. Whether you have questions, want to share tips, or simply talk with another person who has gone through treatment, the program offers a way to find encouragement and build meaningful connections.
Click the link below to connect with a Filsuvez Friends mentor.
Click the link below to connect with a Filsuvez Friends mentor.
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about eb research partnership
Our Mission
We're the largest global nonprofit funding research to discover treatments and cures for Epidermolysis Bullosa (EB), a group of rare and life-threatening genetic disorders that affect the body's largest organ - the skin. Children with EB lack proteins that bind the skin's two layers together, causing it to blister and shear off from even the slightest friction. To date, we've funded 120+ research projects, transforming the clinical landscape from just 2 clinical trials in EB when we were founded to 40 today.
Our Model
At EBRP, we pride ourselves on innovating to accelerate the path to a cure for EB. Through our Venture Philanthropy model, we negotiate a financial interest in the research we fund. If that research leads to a commercially successful therapy, we use our returns to fund additional EB research. In other words, your donation has the potential to grow to multiples of its original value.
We're the largest global nonprofit funding research to discover treatments and cures for Epidermolysis Bullosa (EB), a group of rare and life-threatening genetic disorders that affect the body's largest organ - the skin. Children with EB lack proteins that bind the skin's two layers together, causing it to blister and shear off from even the slightest friction. To date, we've funded 120+ research projects, transforming the clinical landscape from just 2 clinical trials in EB when we were founded to 40 today.
Our Model
At EBRP, we pride ourselves on innovating to accelerate the path to a cure for EB. Through our Venture Philanthropy model, we negotiate a financial interest in the research we fund. If that research leads to a commercially successful therapy, we use our returns to fund additional EB research. In other words, your donation has the potential to grow to multiples of its original value.
