Online and Offline Support: E

Ear Atresia/Microtia

Ear Anomalies Reconstructed: Atresia/Microtia Support Group

Ectodermal Dysplasias

National Foundation for Ectodermal Dysplasias, Inc.

People served: Individuals and families dealing with ectodermal dysplasias
Services provided: Support, information and referral, newsletter, printed material and videotapes, research, dental implant program, and scholarships
Address: 410 E. Main Street, Mascoutah IL 62258-0114
Phone number: (618) 566-2020
Fax number: (618) 566-4718
Email addresses: nfed1@aol.com
Website: http://www.nfed.org/

Eczema

Please note: Eczema can affect all parts of the body.

The National Eczema Society (United Kingdom)

People served: Individuals dealing with eczema, dermatitis, and sensitive skin
Services provided: Information and referral, support, advocacy, and public awareness
Address: 163 Eversholt Street; London NW1 1BU
Phone number: 020 7388 4097
Fax number: 020 7388 5882
Contact person: Emma O'Shea 0171 388 4097
Email address: nateczemasoc@hotmail.com
Website: http://www.eczema.org/

Ehlers-Danlos Syndrome

Please note: Ehlers-Danlos Syndrome affects the entire body.

Canadian Ehlers-Danlos Association

Address (British Columbia Branch): 5333 Miller Road; Duncan, British Columbia; V9L 6R4
Contact person: Janet Yuill
Email address: jyuill@mail.cr.island.net

Address (Nova Scotia Branch): 1979 Fraser Mountain Rd.; R.R. 1, New Glasgow, NS; B2H 5C4
Phone number: (902) 752-6213
Contact person: Joyce L. Rogers
Email address: rrogers@auracom.com

The Ehlers-Danlos Support Group (United Kingdom)

People served: Individuals and families dealing with Ehlers-Danlos Syndrome
Service provided: Support, information and referral, newsletter, library, and public awareness
Address: 1 Chandler Close, Richmond, N Yorks. DL10 5QQ England
Phone number: +44 (0)1748 823867 (UK Office Hours ONLY please!)
Email address: EDS_UK@compuserve.com

The Ehlers-Danlos National Foundation (EDNF) (United States)

People served: Individuals and families dealing with Ehlers-Danlos Syndrome
Services provided: Quarterly newsletter, support groups, database information, research
Address: 6399 Wilshire Blvd. Suite 510; Los Angeles CA 90048
Phone number: (213) 651-3038; 800-956-2902
Email address: loosejoint@aol.com
Website: http://www.ednf.org/

Epidermolysis Bullosa

Please note: Epidermolysis Bullosa affects the entire body.

DebRA = Dystrophic epidermolysis bullosa Research Association

debra (Austria)

debra (Holland)

debra International (United Kingdom)

People served: Individuals and families dealing with Epidermolysis Bullosa
Services provided: Support, information and referral, newsletter, printed materials, database, research, online message board
Email address: admin@debra.org.uk
Website: http://www.debra.org.uk/

debra (United States)

People served: Individuals and families dealing with Epidermolysis Bullosa
Services provided: Support, information and referral, printed materials, newsletter, pen pals, research, special events and more.
Address: 5 West 36th Sreet, Suite 404; New York NY 10018
Phone number: (212) 513-4090
Fax number: (212) 513-4099
Email address: staff@debra.org
Website: http://www.debra.org/

Epilepsy

Please note: Seizures can occur with some syndromes involving craniofacial or other facial anomalies.

Epilepsy Foundation of America

Offline: Information, public and family education, legal and legislative advocacy, and employment assistance
Online: Links to and information about organizations for epilepsy around the world, bulletin board, FAQS, and bookstore