Dystrophic Epidermolysis Bullosa Research Association
75 Broad Street
Toll-free: 855-CURE-4-EB Telephone: 212-868-1573 Fax: 212-868-9296 E-mail: firstname.lastname@example.org Website: http://www.debra.org
Genetic Skin Disease Center
Stanford Medical Dermatology Clinic
Stanford Medicine Outpatient Center
Pavilion B, 4th Floor
Telephone: 650-723-6316 Fax: 650-725-7711 Website: http://dermatology.stanford.edu/contact/
Social Networking Websites
DNAandU.org is a Web site and blog that collects firsthand stories from people facing issues, making tough decisions, and using genomic (DNA) information in their own healthcare. Click on the link to learn from their experiences and/or submit your own story.
RareConnect is an online social network for patients and families to connect with one another and share their experience living with a rare disease. The project is a joint collaboration between EURORDIS (European Rare Disease Organisation) and NORD (National Organization for Rare Disorders). Click on the link above to view the community for Epidermolysis bullosa.
RareShare is an online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders.