Debra Brasil

The mission of DEBRA Brasil is to share the knowledge of Epidermolysis Bullosa (EB), in order to help people with EB to have quality of life and access to appropriate medical treatments. We also promote EB awareness and the use of DEBRA International CPG – Clinical Practice Guidelines with health professionals and the general public. WHAT IS DEBRA INTERNATIONAL? The first DEBRA was founded in 1978 in the United Kingdom by Phyllis, mother of Debra who was born with Dystrophic EB, as a support group for parents and caregivers. Currently there are almost 50 countries that are part of the world’s leading EB patient advocacy and support network. Although DEBRA Brazil is an independent organization and does not receive funding through DEBRA International, we have the support with information and expertise of the most important EB professionals in the world, as well as the support and exchange of experiences with local DEBRAs that are often created and has the direct participation of parents and people with EB. Both DEBRA International and DEBRA Brazil had people with EB as a president NATIONAL REGISTRATION We have an EB national registry that we started in 2014, where more than 865 people have been registered, with 105 deaths since then. This registry helps to direct public policies to be created in places where they have a higher concentration of people with EB, in addition to facilitate research, as many times those treatments are targeted to a specific type of EB. NEWBORN CARE - KIT BORBOLETINHA Our newborn KIT contains emergency products for the treatment of wounds, and information to the medical staff as well as the parents. In addition to the emergency KIT, DEBRA Brazil also has a team of doctors and nurses (volunteers) that gives the necessary support to the medical team treating the newborn. Wound care products are donated by companies and provided until the baby completes 3 months.