Dystrophic epidermolysis bullosa, a medical condition characterized by chronic, painful blistering leading to rough skin, scarring, and even limb disfigurement, is the worst disease that the general public has never heard of. The Dystrophic Epidermolysis Bullosa Research Association of America (DebRA) works toward changing it.
DebRA, the only national non-profit organization dedicated to providing services and funding research into epidermolysis bullosa (EB), was established by Arlene Pessar and Eric Lopez (her son) in 1980. Lopez, who was born with the condition, has testified before Congress in the interest of promoting increased funding for research, public awareness, and clinical centers for patients including a national registry.
Today, the organization provides patients as well as their families, caregivers, and healthcare providers with direct services including education and information to improve their quality of life. It is also known for its active participation in activities related to finding a cure for EB including funding for research and development.
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