Dystrophic Epidermolysis Bullosa Research Association of America
“Because the cost of doing nothing is too great” is an axiom that defines debra of America’s mission and directs all of its actions as an organization. We are dedicated to improving the quality of life for all people living with Epidermolysis Bullosa (EB), a rare and debilitating genetic disease.
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.Disease Support Organization Last Updated: 29 Aug 2021
The Foundation for Women & Girls with Blood Disorders works to ensure all women and girls with blood disorders are correctly diagnosed and optimally managed at every life stage.
Raises awareness and educates key healthcare professionals
Translates and disseminates information and research
Nurtures future healthcare leaders
Fosters collaboration and generates knowledge among core disciplinesDisease Support Organization Last Updated: 11 Mar 2020
The Dystrophic Epidermolysis Bullosa Research Association (debra) is the only national not-for-profit dedicated to supporting research to find a cure and treatments for eb, while also providing programs and services to those who suffer from this rare and debilitating genetic disease.Disease Support Organization Last Updated: 30 Jan 2019
USeb, a nonprofit corporation organized & run primarily by people with EB. Our mission is to provide services that will assist people with EB in becoming more self-reliant through social, cultural, recreational, rehabilitative, educational, & occupational opportunities. We value self-reliance because it inspires individual productivity, builds self-esteem, stimulates human happiness, and heals the dignity of the soul. These benefits particularly enable people with EB to cope and rise to a position where they can succeed independently, help others to do the same, and contribute to society.Disease Support Organization Last Updated: 30 Jan 2019
Pioneering Unique Cures for Kids envisions a day when there are various treatment options for kids with rare diseases, and no child has to die from these diseases again.
By funding and advocating for cutting edge research, Pioneering Unique Cures for Kids helps transform rare, incurable childhood diseases into curable ones, one disease at a time.Disease Support Organization Last Updated: 30 Jan 2019