DEBRA

DEBRA is a non-profit organization that supports individuals and families affected by Epidermolysis Bullosa (EB), a group of genetic skin conditions which cause the skin to blister and tear at the slightest touch.

History

DEBRA was first established in the United Kingdom in 1978 by Phyllis Hilton, whose granddaughter had EB. The organization was named after her granddaughter, Deborah. Since then, DEBRA has grown into an international network with groups in over 40 countries, providing support to EB patients and their families worldwide.

Mission

DEBRA's mission is to improve the quality of life for individuals living with EB through funding research into effective treatments and a possible cure, providing access to specialist care, and offering support services.

Research

DEBRA invests in research to understand the causes of EB, to develop effective treatments, and ultimately to find a cure. The organization funds research projects worldwide, and has contributed to significant advances in understanding the disease and its management.

Support Services

DEBRA provides a range of support services to individuals and families living with EB. These include access to specialist EB nurses, social care support, financial assistance, and advice on living with the condition.

Advocacy

DEBRA advocates for the rights of individuals with EB, working to raise awareness of the condition and to influence policy and practice. The organization campaigns for improved healthcare services and for the availability of effective treatments.

See Also

• Epidermolysis Bullosa
• Genetic Disorders
• Skin Conditions

References

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