Patients & Caregivers
At BioMendics, we strive to transform the lives of people with rare debilitating conditions and those who care for them. We go above and beyond to address the real world needs of the people our medicines help, and we strive to deliver ground-breaking, transformative and effective treatments to patients and caregivers quickly and responsibly.
By listening to patients, caregivers, and the wider communities we serve, we aim to bring about meaningful change across the globe. We firmly believe in collaborating with patient advocacy groups in the most ethical way possible, to help them deliver the support that addresses their members’ needs. BioMendics supports the mission of patient advocacy groups to support patients, their families, and caregivers.
EPIDERMOLYSIS BULLOSA
"'Because the cost of doing nothing is too great' is an axiom that defines our mission and directs all of debra of America's actions as an organization. debra of America’s mission is to improve the quality of life for all people living with EB. To achieve this, we do two things in parallel: we provide free programs and services to the EB Community in the United States and fund the most innovative research directed at symptom relief and a systemic cure."
Click here to visit debra.org
"The Epidermolysis Bullosa Medical Research Foundation was established in 1991 by Gary & Lynn Fechser Anderson at the request of Dr. Eugene Bauer, then Professor and Chairman of the Department of Dermatology at The Stanford University School of Medicine." EBMRF is "committed to raising funds for ongoing research as well as awareness through the media and various fundraising programs."
Click here to visit ebmrf.org
"Founded in 2010 by a group of dedicated parents along with Jill and Ed Vedder (Pearl Jam), EB Research Partnership (EBRP) is the largest 501(c)(3) nonprofit dedicated to funding research to treat and cure Epidermolysis Bullosa (EB), a group of devastating and life-threatening genetic rare diseases affecting children from birth and attacking the body's largest organ: the skin. EBRP combines rigorous and collaborative scientific research, astute business discipline, and a unique philanthropic investment model. Together we are accelerating the path forward to cure EB, and in the process, we are pioneering the roadmap for all disease."
Click here to visit ebresearch.org
"Kisses for EB is dedicated to assisting children and families living with the rare disease Epidermolysis Bullosa.
We are committed to spreading awareness for Epidermolysis Bullosa by telling the stories of our friends and families whose lives have been affected by EB."
Click here to visit kissesforeb.comICHTHYOSIS
"To improve lives and seek cures for those affected by ichthyosis and related skin types."
Click here to visit firstskinfoundation.orgPACHYONYCHIA CONGENITA
"PC Project is dedicated to finding effective treatments and a cure for Pachyonychia Congenita, a painful, debilitating skin disorder, through helping and connecting patients, empowering research, and partnering with industry."
Click here to visit pachyonychia.orgSCLERODERMA
"The National Scleroderma Foundation was founded in 1998 to advance medical research, promote disease awareness, and provide support and education to people with scleroderma."
Click here to visit scleroderma.org