Resources- Specific Diagnosis Card Catalog- Dystrophic Epidermolysis Bullosa
Who to Contact
Dystrophic Epidermolysis Bullosa Research Association of America (D.E.B.R.A.)
5 West 36th Street, Room 404
New York, N.Y. 10018
(212) 868-1573
Web: www.debra.org
DEBRA's mission is to raise funds to encourage and support research into the causes, treatment and cure of Epidermolysis Bullosa and other genetic disorders of the skin, promote education and advocacy, and to provide support and services to people with EB and their families by assisting them in finding medical, social, and genetic counseling.
They have local chapters, and a listing of these may be found in their newsletter. They will give assistance to persons wishing to form a support group in their locality. DEBRA provides parent-to-parent matching through their Peer-To-Peer counseling network, and offer a Pen Pal program for adults and children.
DEBRA publishes two quarterly newsletters,EB Currents, and EB Reporter, both are included in membership fees. They also have a pamphlet,"Hope Through Research," and booklets, "Living with Epidermolysis Bullosa," and "Coping with Epidermolysis Bullosa in the Classroom." DEBRA offers a new parent packet that includes information on EB, pamphlets, and a questionnaire. There are books for distribution and videotapes available. Call or write for further information and an order form.
The Association collects information on physicians and researchers who treat/study the condition and disseminate this information to its members. They will provide referrals to other resources and providers. Additionally they host a bi-annual family conference. Call for further information.
Where to Go to Chat with Others
EBworld
EB Info World's mailing list is made to bring Epidermolysis Bullosa parents, patients and anyone interested in learning more about EB together as an informational and supportive forum. Suggestions and experience sharing is encouraged. All forms of EB are discussed and dealt with, and families who have lost their children or a loved one to EB are also welcome.
Butterflychildren
Epidermolysis Bullosa - EB The Butterfly Children have skins as fragile as a butterfly wing - skin so delicate and fragile that even the slightest touch can hurt. Please join and show your support.
EBsimplex
Epidermolysis Bullosa encompasses a group of blistering skin diseases for which there is no cure and few treatment options. This list is intended to provide an open forum for Epidermolysis Bullosa Simplex patients, parents and friends to offer each other information and support about this skin disorder. EB Simplex is the somewhat less debilitating form of Epidermolysis Bullosa, and we would like to confine the list to posts relating to this form.
EB Families
This is a support group for individuals, parents, and families with Epidermolysis Bullosa. We welcome every type of EB in this group. We will be
covering topics about wound care, pain managment, surgeries, medical insurance, and other things that can and do relate to EB, as well as day to day things
about our families, lives, and children. This is another place where we can pool resources, and vent about frustrations, and talk about the wonderous things happening in our families lives. Every person is valued, and every insight honored.
DEBRA Community Forum
DebRA has provided this message board as a place where those affected by EB can share information and support each other.
Learn More About It
What is Epidermolysis Bullosa?
General Guidelines to the Routine Management and Care of Inherited EB
Epidermolysis Bullosa Dystrophica, Pasini Type
from OMIM
Epidermolysis Bullosa Dystrophica, Hallopeau-Siemens Type
Epidermolysis Bullosa Dystrophica, Dominant Neonatal Form
Links
DEBRA - Dystrophic Epidermolysis Bullosa Research Association of America, Inc.
EB Medical Research Foundation Home Page
National Epidermolysis Bullosa Registry
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