DebRA's Patient Care Conference
Online, June 15, 2010 (Newswire.com) - (June 15, 2010) - A family is getting excited and preparing to pack for a four day trip. Toothbrush. Check. Extra socks. Check. Sunglasses. Check. Four days worth of nonstick bandages. Check. Topical creams. Check. Pain medications. Check. This is no ordinary vacation and no ordinary family.
Every two years, patients and families affected by Epidermolysis Bullosa (EB)- a devastating and sometimes fatal genetic skin disease characterized by skin so fragile skin the slightest friction can cause severe blistering inside and outside the body- gather for DebRA's Patient Care Conference (PCC). This year, the conference is being held in Cincinnati and is co-hosted by the Cincinnati Children's Hospital Medical Center (CCHMC), one of the leading medical institutions for EB. Dystrophic Epidermolysis Bullosa Research Association of America (DebRA) is the only national non-profit organization dedicated to providing direct services for EB patients and their caregivers and funding research toward treatment and a cure. DebRA's own Nurse Educator, an expert in EB management, resides at CCHMC. Other essential DebRA programs include the Wound Care Clearinghouse which provides free medical supplies to patients and the New Family Advocate Program (NFAP)that provide a comforting support system for newborns and their families as they begin to learn to care for a child with EB.
This year's conference promises to be one of the best to date. The most current information on EB research will be presented by six of the top researchers in the USA and attendance is at a record high. Not only is the Patient Care Conference a time for EB patients to get the latest updates and ask questions directly to medical experts, it is also a time for families to meet, share their stories and exchange advice. Children and adults affected by EB often live in isolation, both from fear of prejudice and fear of unintentional physical harm. The opportunity to attend the PCC helps these patients and their families understand that they are not alone in their struggle.
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About DebRA of America
The only national non-profit organization that provides direct services and support to patients with Epidermolysis Bullosa (EB) and funds research for treatment and a cure. Founded over 30 years ago, DebRA of America has significantly increased awareness and funded research grants for EB as well as offering a caring support system, high-quality medical information, wound care supplies, access to medical experts, and also hope of someday finding a cure for thousands of patients and their families.