1. Welcome The NFED seeks to enrich the lives of individuals affected by all forms of the ectodermal dysplasia syndromes. Request Information http://www.nfed.org/

Request Information Information Request Form Publication Order Form Contact Us About The NFED Board of Directors Conferences History Meet Some of Our Families ... Vision, Mission, Values About Ectodermal Dysplasia FAQs / General Description Genetics Medical Articles ... Types of ED Support Kids' Corner Teens Parents / Adults Research General Announcements Current ED Research Completed ED Research Grant Application Process Giving Donate Fundraising Events Sponsorship Opportunities Types of Gifts ... Your Donations At Work NFED P.O. Box 114, 410 E. Main Street Mascoutah, IL 62258-0114 Phone - 618-566-2020 Fax - 618-566-4718 E-mail - info@nfed.org Welcome to the NFED! The 2003 Annual Report is now available Download Here Update 5/04 Web Counter Visits since February 15, 1999

2. Ectodermal Dysplasia Society Home Page ectodermal dysplasia Society. Welcome to our website. ectodermal dysplasia Society Frames Version. ectodermal dysplasia Society - Text Only Version. http://www.ectodermaldysplasia.org/

Ectodermal Dysplasia Society Welcome to our website This website has been developed by the Ectodermal Dysplasia Society (formerly known as the British Ectodermal Dysplasia Support Group) to help people with Ectodermal Dysplasia (ED). ED is not a single disorder, but a group of closely related conditions. More than 150 different syndromes have been identified. The Ectodermal Dysplasias are heritable conditions in which there are abnormalities of two or more ectodermal structures such as the hair (tends to be very thin and sparse), teeth (absent, pointed or conical), nails, sweat glands (little or no sweating), cranial-facial structure, the eyes, digits and other parts of the body. Each combination of features represents another type of ED Syndrome and has a specific name. You may have found our site because you have some of these symptoms; if so, enter our site below to find out more. Please click on one of the two links below to enter our site. To aid navigation and to view graphics, we recommend using the frames version. However, if you are using technology such as synthesised speech or Braille output software please use the text only version. You may also need to use the text only version if your browser does not support cascading style sheets. Ectodermal Dysplasia Society - Frames Version Ectodermal Dysplasia Society - Text Only Version

3. The Ectodermal Dysplasia Mailing List Includes instructions on joining the list, FAQs and links to further resources. http://hometown.aol.com/charliein/ed/home.html

Main htmlAdWH('7002568', '234', '60'); The Ectodermal Dysplasia Mailing List Web Page Welcome to the homepage of the ED Mailing List Web Page . Here we'll provide a source of information that has been posted on the ED Mailing List as well as a list of useful links to other resources. It is independently operated and supported by people with ED (or related conditions), or friends/family of those who know people with it. What we offer: Our Frequently Asked Questions (FAQ). How to join the List Useful Links to Resources ( under construction! Be sure to visit our ED FAMILY PAGE Additional information and resources can be found at Michael Christy's ED INFORMATION PAGE Check out some photos from one of members: HypocuED ED Information in French: Oliver Le Mo NEW ! Get an e-mail alert when this page changes! Please keep this in mind: The ED Mailing List and this web site are contributed to and maintained by individuals who have been touched by ED. Many of the postings deal with the ways these individuals have handled their ED. You are welcome to contribute to the discussion and take whatever information you find useful. Please remember : this List and web site are not affiliated with any medical group, hospital or physician. Any advice or suggestions you gain from these postiings are to be used at your own risk.

4. ECTODERMAL DYSPLASIA: Contact A Family - For Families With Disabled Children: In Information about the ectodermal dysplasia disorders, the inheritance patterns and prenatal diagnosing. http://www.cafamily.org.uk/Direct/e14.html

printer friendly ECTODERMAL DYSPLASIA home more about us in your area conditions information ... how you can help search this site Did you find this page helpful? yes no Ectodermal Dysplasia (ED) is not a single disorder, but a group of closely related conditions. More than 150 different syndromes have been identified. The Ectodermal Dysplasias are heritable conditions in which there are abnormalities of two or more ectodermal structures such as the hair, teeth, nails, sweat glands, cranial-facial structure, digits and other parts of the body. Before a developing fetus is large enough to be seen, a layer of cells covers the outside of the body. This surface layer of cells is called the ectoderm, and from it develop the skin, hair, nails, teeth, nerve cells, sweat glands, parts of the eye and ear, and parts of some other organs. Each of the listed parts of the body, then, is called an ectodermal structure. There are many disorders that involve one of these structures only and are not properly called ED. Any combination of defects involving more than one of these structures, however, should be called an Ectodermal Dysplasia syndrome; the list of such combinations is extensive. For example, one person may have missing teeth and defective nails, while another may have missing teeth, inability to sweat and sparse hair. Still another may have sparse hair and a hearing loss. Each combination of features represents another type of ED syndrome and has a specific name.

5. FAQs / General Description About the ectodermal dysplasia Syndromes. Frequently Asked Questions. http://www.nfed.org/FAQ.htm

Request Information Information Request Form Publication Order Form Contact Us About The NFED Board of Directors Conferences History Meet Some of Our Families ... Vision, Mission, Values About Ectodermal Dysplasia FAQs / General Description Genetics Medical Articles ... Types of ED Support Kids' Corner Teens Parents / Adults Research General Announcements Current ED Research Completed ED Research Grant Application Process Giving Donate Fundraising Events Sponsorship Opportunities Types of Gifts ... Your Donations At Work About the Ectodermal Dysplasia Syndromes Frequently Asked Questions What is Ectodermal Dysplasia (ED)? Does ED affect lifespan? How many people are affected by ED? What causes ED? ... How does ED affect someone’s daily life? What is ED? The ectodermal dysplasia (ED) syndromes are a group of about 150 heritable disorders that affect the ectoderm, the outer layer of tissue in a developing baby. ED syndromes affect both males and females of all races and ethnic groups. The ectoderm contributes to the formation of many parts of the body, including the skin, sweat glands, hair, teeth, and nails. During embryonic development, these and/or other parts of the baby’s body, including the lens of the eye, parts of the inner ear, the fingers and toes, or nerves, among others, may fail to develop normally. When a child has at least two types of abnormal ectodermal features—for example, malformed teeth and extremely sparse hair—the child is identified as being affected by an ED “syndrome.”

6. Experimental Ophthalmology Unit, University Of Liverpool, UK Research and teaching centre for the control and treatment of eye disorders and our interests include ARMD, corneal scarring, diabetes, ectodermal dysplasia, genetics, glaucoma, melanoma and PVR. http://www.liv.ac.uk/ophthalmology/

Experimental Ophthalmology Unit * Home Page AMD/ARMD Cornea Ectodermal Dysplasia Glaucoma ... University Feedback: ophthalmology@liv.ac.uk Unit Leader - Professor Ian Grierson Recent Publications Contact Us/Personnel List Welcome to the Experimental Ophthalmology Unit, a clinical, research and teaching centre for the control and treatment of eye disorders. Our interests include AMD/ARMD, corneal scarring, diabetes, ectodermal dysplasia, genetics, glaucoma, melanoma and PVR. Our Unit is comprised of both the Academic Unit of Ophthalmology and the clinical St Paul's Eye Unit. The Academic Unit is located in the Department of Medicine which is part of the Faculty of Medicine at the University of Liverpool RLBUHT ). Our Unit performs basic science and clinical research into the control of eye disease and ocular tissue repair and regeneration. We are also the focus of a wide variety of teaching activities at levels ranging from undergraduate to postgraduate, medical and non-medical. The Academic Unit currently employs over 20 research scientists committed to the development of novel techniques that will improve the understanding and treatment of ocular disorders. Ongoing projects within the Experimental Ophthalmology Unit include analysis of the:

7. EDS: What Is Ectodermal Dysplasia (whatised.htm) What is ectodermal dysplasia (ED)? ectodermal dysplasia (ED) is not a single disorder, but a group of closely related conditions. http://www.ectodermaldysplasia.org/whatised.htm

What is Ectodermal Dysplasia (ED)? Ectodermal Dysplasia (ED) is not a single disorder, but a group of closely related conditions. More than 150 different syndromes have been identified. The Ectodermal Dysplasias are heritable conditions in which there are abnormalities of two or more ectodermal structures such as the hair, teeth, nails, sweat glands, cranial-facial structure, digits and other parts of the body. There are many disorders that involve one of these structures only and are not properly called ED. Any combination of defects involving more than one of these structures, however, should be called an Ectodermal Dysplasia Syndrome; the list of such combinations is extensive. For example, one person may have missing teeth and defective nails, while another may have missing teeth, inability to sweat, and sparse hair. Still another may have sparse hair and a hearing loss. Each combination of features represents another type of ED Syndrome and has a specific name. Picture of child with ED What is an ectodermal structure? What causes Ectodermal Dysplasia? How Ectodermal dysplasia affects the following:- Sweat Function Skin Hair Nails ... Ears, Nose and Throat

8. MedlinePlus Medical Encyclopedia: Ectodermal Dysplasia ectodermal dysplasia. Alternative names Return to top. Anhidrotic ectodermal dysplasia Definition Return to top. ectodermal dysplasia http://www.nlm.nih.gov/medlineplus/ency/article/001469.htm

@import url(http://www.nlm.nih.gov/medlineplus/images/advanced.css); Skip navigation Medical Encyclopedia Other encyclopedia topics: A-Ag Ah-Ap Aq-Az B-Bk ... Z Ectodermal dysplasia Contents of this page: Illustrations Alternative names Definition Causes, incidence, and risk factors ... Prevention Illustrations Skin layers Alternative names Return to top Anhidrotic ectodermal dysplasia Definition Return to top Ectodermal dysplasia is a hereditary condition characterized by abnormal development of the skin and associated structures (hair, nails and teeth, and sweat glands). Causes, incidence, and risk factors Return to top There are many different types of ectodermal dysplasia of which X-linked anhidrotic ectodermal dysplasia is the most common. Because the disease is X-linked, males are affected, although females in some cases may also display a range of symptoms. An autosomal dominant form exists in which females and males are equally affected and is symptomatically almost identical to the X-linked form of the disease. Multiple genes have been discovered to cause ectodermal dysplasias. Ectodermal dysplasia may affect, to varying degrees, all of the structures associated with the development of the skin. Absent or

9. Medical Encyclopedia: Ectodermal Dysplasia (Print Version) Medical Encyclopedia ectodermal dysplasia. URL of this page http//www.nlm.nih.gov/medlineplus/ency/article/001469.htm. Anhidrotic ectodermal dysplasia http://www.nlm.nih.gov/medlineplus/print/ency/article/001469.htm

To print this page, use the print option from your browser. To close this window, click on the "x" in the upper right hand corner of the window. Medical Encyclopedia: Ectodermal dysplasia URL of this page: http://www.nlm.nih.gov/medlineplus/ency/article/001469.htm Alternative names Anhidrotic ectodermal dysplasia Definition Ectodermal dysplasia is a hereditary condition characterized by abnormal development of the skin and associated structures (hair, nails and teeth, and sweat glands). Causes, incidence, and risk factors There are many different types of ectodermal dysplasia of which X-linked anhidrotic ectodermal dysplasia is the most common. Because the disease is X-linked, males are affected, although females in some cases may also display a range of symptoms. An autosomal dominant form exists in which females and males are equally affected and is symptomatically almost identical to the X-linked form of the disease. Multiple genes have been discovered to cause ectodermal dysplasias. Ectodermal dysplasia may affect, to varying degrees, all of the structures associated with the development of the skin. Absent or decreased sweating in people with anhidrotic ectodermal dysplasia is caused by absence of sweat glands. Affected children have difficulty controlling fevers and mild illness may produce extremely high fevers, because of absent temperature regulation by sweating. Affected adults are unable to tolerate a warm environment and require special measures to maintain a normal body temperature.

10. THE ANDY FUND Describes the health condition of a boy who was born with ectodermal dysplasia with immune deficiency caused by a mutation on the fourth part of the NEMO gene. http://www.andy.org.mx

T h e A N D Y F u n d a t C h i l d r e n ' s H o s p i t a l T r u s t SEARCH The Web andy.org.mx Versión en Español. English Version. "Investigadores aprendieron del DNA de Andy en Octubre 2000 que la mutación en el gen NEMO ocasiona deficiencia inmunológica primaria y displasia ectodérmica, dijo el Dr. Jordan Orange" The Daily News Tribune, 21 febrero, 2003 conozca mas "Researchers learned from Andy's DNA in October 2000 that a mutated NEMO gene causes both primary immune deficiency and ectodermal dysplasia, Dr. Jordan Orange said" The Daily News Tribune, Feb. 21, 2003 learn more D e E N C O N T R A N D O a N E M O, a E N C O N T R A N D O a S O F I A, a R E E M P L A Z A N D O a N E M O. N E M O Nuclear Factor Kappa B Essential Modifier F r o m F I N D I N G N E M O, t o F I N D I N G S O F I A

11. Anhydrotic Ectodermal Dysplasia Anhydrotic ectodermal dysplasia Oligodontia with conical teeth. the National Foundation for ectodermal dysplasia. Return to Image Index page. http://tray.dermatology.uiowa.edu/AnEcDy01.htm

Dept. of Dermatology - University of Iowa College of Medicine Anhydrotic Ectodermal Dysplasia - Oligodontia with conical teeth For more information see: the Online Mendelian Inheritance in Man (OMIM) the National Foundation for Ectodermal Dysplasia Return to Image Index page. Return to Image Index page. Return to Dermatology's Home page. September, 1995

12. Ectodermal Dysplasia Image that s a link to Genetics Education Center Support Page ectodermal dysplasia. National dysplasia? ectodermal dysplasia maililng list. http://www.kumc.edu/gec/support/ectoderm.html

Ectodermal Dysplasia National Foundation for Ectodermal Dysplasias 410 E. Main Street, P.O. Box 114 Mascoutah, Illinois 62258-0114 USA Telephone 618-566-2020 Fax 618-566-4718 Illinois Relay 1-800-688-4889 (TTY) Office Hours: 8 a.m. to 4 p.m. CST Including what is ectodermal dysplasia? Ectodermal dysplasia maililng list LOCKS OF LOVE , a charity that provides hairpieces to financially disadvantaged children under the age of eighteen with medical hair loss 1640 S. Congress Ave., Suite 104 Palm Springs, FL 33461 (561) 963-1677 or Fax:(561) 963-9914 Also See: National organizations information on genetic conditions or birth defects Australian Foundation for Ectodermal Dysplasia Fact Sheet To locate a genetic counselor or clinical geneticist in your area: Professional Genetics Societies Genetic clinics, centers, departments Genetic Societies Clinical Resources ... Search Genetics Education Center Debra Collins, M.S. CGC , Genetic Counselor, dcollins@kumc.edu This site subscribes to the principles of the HONcode (Health on the Net, Code of Conduct for Medical and Health Web Sites)

13. Dermatlas: Online Dermatology Image Library Dermatology Image,ectodermal Dysplas Dermatlas Dermatology Images trichothiodystrophy,ectodermal dysplasia,dermatology image,Tay syndrome images. Match ALL words Match ANY word. Dermatology Images, http://dermatlas.med.jhmi.edu/derm/result.cfm?Diagnosis=-1792936279

14. Dermatlas: Online Dermatology Image Library Dermatology Image,ectodermal Dysplas dystrophy,keratoderma,ectodermal dysplasia,ectodermal dysplasia,ectodermal dysplasia,ectodermal dysplasia,ectodermal dysplasia,ectodermal dysplasia,dermatology http://dermatlas.med.jhmi.edu/derm/result.cfm?Diagnosis=527679626

15. Ectodermal Dysplasia - Information / Diagnosis / Treatment / Prevention home genetic disorders ectodermal dysplasia ectodermal dysplasia. NORD ectodermal dysplasias Offers synonyms, a general discussion and resources. http://www.healthcyclopedia.com/genetic-disorders/ectodermal-dysplasia.html

Home Health cyclopedia All Topics by Category The Good Health Search Engine Health Conditions A-Z Gurus ... genetic disorders > ectodermal dysplasia Ectodermal Dysplasia Information / Diagnosis / Treatment / Prevention External links (marked with an arrow ) open in a new window. This site is a web directory and does not offer medical advice. We cannot take responsibility for information found on listed sites. This Page Related Topics Medical Definition Health News Web Directory: Related Topics: Skin Disorders Medical Definition: University of Newcastle-upon-Tyne Medical Dictionary: "ectodermal dysplasia" Health News: Search millions of published articles for news on Ectodermal Dysplasia Modern Medicine Aging The Ardell Wellness Report HealthFacts Medical Post Medical Update Men's Health and the National Women's Health Report Note: Subscription required to access the full text of articles. Web Directory: Ectodermal Dysplasia Society Information about the organization as well as the ED condition. Includes links, news articles and contact details. National Foundation for Ectodermal Dysplasia ED organization based in North America offering information/advice to individuals and supporting scientific research. Includes a newsletter, publications, FAQs and a list of services.

16. AllRefer Health - Ectodermal Dysplasia (Anhidrotic Ectodermal Dysplasia) ectodermal dysplasia (Anhidrotic ectodermal dysplasia) information center covers causes, prevention, symptoms, diagnosis, treatment, incidence, risk factors http://health.allrefer.com/health/ectodermal-dysplasia-info.html

AllRefer Channels :: Yellow Pages Reference Health Home ... Contact Us Quick Jump ADD/ADHD Allergies Alzheimer's Disease Arthritis Asthma Back Pain Breast Cancer Cancer Colon Cancer Depression Diabetes Gallbladder Disease Heart Attack Hepatitis High Cholesterol HIV/AIDS Hypertension Lung Cancer Menopause Migraines/Headaches Osteoporosis Pneumonia Prostate Cancer SARS Stroke Urinary Tract Infection 1600+ More Conditions Alternative Medicine Health News Symptoms Guide Special Topics ... Medical Encyclopedia You are here : AllRefer.com Health Ectodermal Dysplasia Ectodermal Dysplasia Definition Prevention Treatment Expectations or Prognosis ... Go To Main Page Alternate Names : Anhidrotic Ectodermal Dysplasia Definition Ectodermal dysplasia is a hereditary condition characterized by abnormal development of the skin and associated structures (hair, nails and teeth, and sweat glands). Skin Layers There are many different types of ectodermal dysplasia of which X-linked anhidrotic ectodermal dysplasia is the most common. Because the disease is X-linked, males are affected, although females in some cases may also display a range of symptoms. An autosomal dominant form exists in which females and males are equally affected and is symptomatically almost identical to the X-linked form of the disease. Multiple genes have been discovered to cause ectodermal dysplasias.

17. AllRefer Health - Ectodermal Dysplasia Prevention (Anhidrotic Ectodermal Dysplas ectodermal dysplasia (Anhidrotic ectodermal dysplasia) information center covers Prevention. ectodermal dysplasia. ectodermal dysplasia. http://health.allrefer.com/health/ectodermal-dysplasia-prevention.html

AllRefer Channels :: Yellow Pages Reference Health Home ... Contact Us Quick Jump ADD/ADHD Allergies Alzheimer's Disease Arthritis Asthma Back Pain Breast Cancer Cancer Colon Cancer Depression Diabetes Gallbladder Disease Heart Attack Hepatitis High Cholesterol HIV/AIDS Hypertension Lung Cancer Menopause Migraines/Headaches Osteoporosis Pneumonia Prostate Cancer SARS Stroke Urinary Tract Infection 1600+ More Conditions Alternative Medicine Health News Symptoms Guide Special Topics ... Medical Encyclopedia You are here : AllRefer.com Health Ectodermal Dysplasia : Prevention of Ectodermal Dysplasia Ectodermal Dysplasia Definition Prevention Treatment Expectations or Prognosis Complications Calling Your Health Care Provider ... Go To Main Page Alternate Names : Anhidrotic Ectodermal Dysplasia Ectodermal Dysplasia Prevention Genetic counseling for prospective parents with a family history of ectodermal dysplasia is recommended. Prenatal diagnosis of ectodermal dysplasia is possible in many cases. Previous Top Next Jump to another section Definition Ectodermal Dysplasia Prevention Ectodermal Dysplasia Treatment Ectodermal Dysplasia Prognosis Ectodermal Dysplasia Complications Calling Your Health Care Provider Topics that might be of interest to you Febrile Seizures Biopsy Skin Lesion Biopsy Other Topics Body Temperature Normals Chronic Heat Intolerance Nasal Discharge ... Sweating - Excessive Review Date : 11/17/2003 Reviewed By : Douglas R. Stewart, M.D., Division of Medical Genetics, Hospital of the University of Pennsylvania, Philadelphia, PA. Review provided by VeriMed Healthcare Network.

18. Ectodermal Dysplasia What is ectodermal dysplasia? Each combination is considered a distinct type of ectodermal dysplasia. How is ectodermal dysplasia treated? http://dentistry.ucsf.edu/cranio/ectodermal.htm

What is ectodermal dysplasia? Ectodermal dysplasia is a disorder involving two or more of the ectodermal structures, which include the skin, hair, nails, teeth, mucus and sweat glands. Each person with ectodermal dysplasia may have a different combination of defects. One may have hair and nails affected, while another may have involvement of sweat glands and teeth. Each combination is considered a distinct type of ectodermal dysplasia. How is ectodermal dysplasia treated? Because there are so many presentations of this disorder, several times a year a special ectodermal dysplasia clinic is arranged at the Center for Craniofacial Anomalies at UCSF. This clinic includes our regular team of specialists plus a dermatologist and a prosthodontist. The special needs of the patient are taken into consideration as a treatment plan is developed which may include recommendations for dentures or implants, special treatment for hair, nails and skin, or recommendations for lifestyle adjustments to maximize comfort and health. A child with ectodermal dysplasia may encounter social and emotional challenges unique to this condition. Support organizations and resources are available for children and their families (see

19. Hypohidrotic Ectodermal Dysplasia / Family Village Library Hypohidrotic ectodermal dysplasia. Hypohidrotic ectodermal dysplasia with Hypothyroidism and Ciliary Dyskinesia From Online Mendelian Inheritance of Man (OMIM). http://www.familyvillage.wisc.edu/lib_hypoh.htm

Hypohidrotic Ectodermal Dysplasia Who to Contact Where to Go to Chat with Others Learn More About It Web Sites ... Search Google for "Hypohidrotic Ectodermal Dysplasia" Who to Contact Sarah Moody Foundation (formerly known as the HED Foundation) P.O. Box 9421 Hampton, Virginia 23670-0421 E-mail: kim@hedfoundation.org Website: http://www.hedfoundation.org/ The mission of the Sarah Moody Foundation is to improve the quality of life for children suffering from Sarah Moody Foundation and related disorders that affect the body's ability to cool itself. One of the most important ways in which the Sarah Moody Foundation enhances the quality of life is through the distribution of personal cooling systems, most commonly the KoolVest ®. Where to Go to Chat with Others Ectodermaldysplasia Support for people and families affected by the various forms of ectodermal dysplasia, including Hypohidrotic Ectodermal Dysplasia Learn More About It Rapp-Hodkins Syndrome Hypohidrotic Ectodermal Dysplasia with Hypothyroidism and Agenesis of the Corpus Callosum From Online Mendelian Inheritance of Man (OMIM) Hypohidrotic Ectodermal Dysplasia with Hypothyroidism and Ciliary Dyskinesia From Online Mendelian Inheritance of Man (OMIM) Web Sites HED Foundation and Related Disorders: CoolVests Sarah Moody Foundation Back to [ G - H Family Village Home Library Coffee Shop ... Information Last Updated 1/15/2004 by familyvillage@waisman.wisc.edu

20. Ectodermal Dysplasia Library E F. ectodermal dysplasia. ectodermal dysplasia Support for people and families affected by the various forms of ectodermal dysplasia. http://www.familyvillage.wisc.edu/lib_ecto.htm

Ectodermal Dysplasia Who to Contact Where to Go to Chat with Others Learn More About It Web Sites ... Search Google for "Ectodermal Dysplasia" Who to Contact National Foundation for Ectodermal Dysplasias 219 East Main, Box 114 Mascoutah, Illinois, USA 62258-0114 618-566-4718 (fax) Web: http://www.nfed.org/ The National Foundation for Ectodermal Dysplasias (NFED) provides support and information to those affected by ED, assists the medical and dental profession with useful information on early diagnosis and treatment options, identifies medical facilities with multi-disciplinary treatment teams for ED, maintains a data base of health care professionals with expertise on this condition and conducts educational meetings for families and health care providers. NFED will also provide financial assistance to qualified families for medically necessary care, such as dental care, wigs and air conditioning. NFED has local chapters and prints a directory of members each year which identifies age, type of Ectodermal Dysplasia, and geographical location. The Foundation publishes a newsletter

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