Resources for Individuals Affected by Ectodermal Dysplasia Syndromes

Dental Resources
American Dental Association
This web site includes a directory of American Dental Association members along with dental care, research, and clinical resources.
National Institute of Dental and Craniofacial Research (NIDCR)
This website has information on research activities and dental, oral, and craniofacial genetic disorders.
American Academy of Pediatric Dentistry
Website includes a long listing of dental resources and publications along with an area just for kids!
American College of Prosthodontists
This site is a good source of information for rehabilitative dentistry.
Procter & Gamble Dental Area
This site contains links to patient information, product information and on-line journals along with many dental links.
Nobel Biocare
Information on dental implants
Wide Smiles
Resource and information on cleft lip and palate

Dermatology Resources
American Academy of Dermatology
Camp Discovery

Genetic Resources
March of Dimes Resource Center
Topics ranging from birth defects information to infant health statistics to public policy are presented at this website.
Family Village
A comprehensive website that contains information and resources and provides chat rooms for people with a range of disabilities, their families, and their healthcare providers.
Genetic Alliance
This website contains a directory of genetic organizations and useful resources including information on genetics, education, disability, research, health care, and health insurance.
National Organization for Rare Disorders (NORD)
This website lists the Rare Disease Datebase and the Organizational Database, and other general information on rare diseases with contacts to support groups.
Office of Rare Diseases
This website provides information on more than 6,000 rare diseases. It is seperated into four categories: patient resources about rare conditions and their treatment, education and support organizations of interest, resources for research on rare diseases, and rare diseases clinial research database.
National Institutes of Health (NIH)
This website contains research news, health information, and the NIH Calendar of Events

International Links
Selbsthilfegruppe Ektodermale Dysplasie
Asociación de Afectados por Displasia Ectodérmica
Association Francaise des Dysplasies Ectodermiques (AFDE)
(British) Ectodermal Dysplasia Society
Australia Society for ED--OZED
Netherlands Support
ANDE – ASSOCIAZIONE NAZIONALE DISPLASIA ECTODERMICA
Asociacion Mexicana De Displasia Ectodermica Mariana, A.C. (Group based in Mexico)
Svenska ED-föreningen (Group based in Sweden)

Miscellaneous Links
American Academy of Pediatrics
Epidermolysis Bullosa Research Association of America (D.E.B.R.A.)
Foundation for Ichthyosis and Related Skin Types (F.I.R.S.T)
National Alopecia Areata Foundation
National Psoriasis Foundation
Incontinentia Pigmenti International Foundation
Dyskeratosis Congenita Outreach Network
Occulo-Dento-Digital Support Group (O.D.D.D)

National Eczema Association for Science and Education