About Debra
Debra of America: Providing Hope and Support to Those Living with Epidermolysis Bullosa
Debra of America is a non-profit organization that has been providing free programs and services to those living with Epidermolysis Bullosa (EB) for over 35 years. The organization was founded in 1980 by a group of parents who were determined to find a cure for their children who were suffering from this rare genetic skin disorder.
Epidermolysis Bullosa is a painful and debilitating condition that affects approximately 1 in every 50,000 live births. It causes the skin to become extremely fragile, leading to blisters, open sores, and scarring. There are four main types of EB: Simplex, Junctional, Dystrophic, and Kindler Syndrome. Each type varies in severity but all can have a significant impact on the quality of life for those affected.
Debra's mission is to improve the quality of life for individuals and families affected by EB through research funding, patient support services, advocacy efforts, and public awareness campaigns. The organization has made significant strides towards finding a cure for EB through its research initiatives.
One of Debra's most notable achievements was the establishment of the Debra International Research Consortium (DIRC) in 2008. This consortium brings together leading researchers from around the world who are dedicated to finding effective treatments and ultimately a cure for EB.
In addition to its research efforts, Debra provides numerous support services for individuals living with EB including wound care education programs; financial assistance programs; summer camps specifically designed for children with EB; family retreats; peer support groups; educational resources; advocacy efforts on behalf of patients' rights; as well as other community outreach initiatives.
The organization also hosts an annual conference where patients can connect with one another while learning about new treatments or therapies available within their communities or abroad. This conference provides an opportunity for patients and their families to learn about the latest research developments, connect with other families affected by EB, and receive support from medical professionals.
Debra's work has been recognized by numerous organizations including the National Institutes of Health (NIH), which awarded Debra a grant to fund its research initiatives. The organization has also received recognition from the American Academy of Dermatology for its advocacy efforts on behalf of patients with EB.
In conclusion, Debra of America is an organization that provides hope and support to those living with Epidermolysis Bullosa. Through its research funding, patient support services, advocacy efforts, and public awareness campaigns, Debra is making significant strides towards finding a cure for this rare genetic skin disorder. If you or someone you know is living with EB or would like to learn more about how you can help support this important cause please visit www.debra.org today!