1. Welcome 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. http://www.nfed.org/

Request Information Information Request Form Publications Contact Us Subscribe to NFED E-news 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! 2005 National Family Conference Photos The 2004 Annual Report is available Download Here The 2004 990 is available - Download Here The 2004 Audit is available - Download Here Update 8/05 Web Counter Visits since February 15, 1999

2. Ectodermal Dysplasia Society Home Page ectodermal dysplasia Society a support group for people with ED. 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

htmlAdWH('93212823', '728', '90'); Main 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 how we can help medical information index of conditions ... how you can help 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. National Foundation For Ectodermal Dysplasia The NFED seeks to enrich the lives of individuals affected by all forms of the ectodermal dysplasia syndromes. http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

6. EDS: What Is The Ectodermal Dysplasia Society? (xdsupgrp.htm) The ectodermal dysplasia Society produces a newsletter four times a year. The ectodermal dysplasia Society has links with the following ED groups http://www.ectodermaldysplasia.org/text/xdsupgrp.htm

What is the Ectodermal Dysplasia Society? Charity No.1089135 In 1984 a support group was established by two mothers, for mutual support. The group had grown by 1996 to a membership of 50 and, largely due to additional information available on the internet, this number continued to grow. During 2000, the name of the organisation was changed to the Ectodermal Dysplasia Society and a Steering Committee was established with a view to moving the group to charitable status, which was finally achieved in October 2001. At that time the steering committee became a Board of Trustees, and aims to meet 4 times per year. Membership now stands at over 200. A Medical Advisory Board was also established with specialists from various fields from around the UK, including: three Geneticists three senior Dentists an ENT Consultant an Otolaryngology Consultant two lecturers in Ophthalmology two Paediatric Dermatology Consultants This Board aims to meet twice a year, is carrying out and supporting research. The Ectodermal Dysplasia Society aims to: obtain answers from Medical professionals to members' specific questions support families when they approach organisations such as Local Authorities, Social Services, etc., by putting together a personal report explaining very simply how ED affects them

7. Ectodermal Dysplasia Society Home Page ectodermal dysplasia Society a support group for people with ED http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

8. Ophthalmology - School Of Clinical Sciences - 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/

Ophthalmology School of Clinical Sciences University of Liverpool Our WWW site has moved. You are being transferred automatically to its new home. Alternatively click on the link below: Ophthalmology - School of Clinical Sciences - University of Liverpool - UK

9. ECTODERMAL DYSPLASIA Contact A Family - For Families With Information about the ectodermal dysplasia disorders, the inheritance patterns and prenatal diagnosing. http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

10. FAQs / General Description The ectodermal dysplasia (ED) syndromes are a group of about 150 heritable The emotional pain of ectodermal dysplasia can be overcome with one s own http://www.nfed.org/FAQ.htm

Request Information Information Request Form Publications 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 / General Description 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.”

11. The Sarah Moody Foundation Gives Children Worldwide Hope For A Thousands of children need our cooling vests, pillows, wristbands, hats, wheelchair cooling seats, UVA Bprotective clothing, environmental http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

12. MedlinePlus Medical Encyclopedia: Ectodermal Dysplasia Anhidrotic ectodermal dysplasia. Definition Return to top. ectodermal dysplasia is a hereditary condition characterized by abnormal development of the skin http://www.nlm.nih.gov/medlineplus/ency/article/001469.htm

@import url(/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

13. Connexin30 Mutations Responsible For Hidrotic Ectodermal Dysplasia Connexin30 mutations responsible for hidrotic ectodermal dysplasia cause abnormal hemichannel activity Guilherme Munhoz Essenfelder1 2 http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

14. Medical Encyclopedia: Ectodermal Dysplasia (Print Version) ectodermal dysplasia is a hereditary condition characterized by abnormal There are many different types of ectodermal dysplasia of which Xlinked 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.

15. 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

16. EMedicine - Ectodermal Dysplasia Article By Carola ectodermal dysplasia ectodermal dysplasia syndrome (EDS) is a large, heterogeneous, nosologic group of inherited disorders that share primary http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

17. EMedicine - Ectodermal Dysplasia : Article By Carola Duran-McKinster, MD ectodermal dysplasia ectodermal dysplasia syndrome (EDS) is a large, heterogeneous, nosologic group of inherited disorders that share primary defects in http://www.emedicine.com/derm/topic114.htm

(advertisement) Home Specialties Resource Centers CME ... Patient Education Articles Images CME Patient Education Advanced Search Consumer Health Link to this site Back to: eMedicine Specialties Dermatology Pediatric Diseases Ectodermal Dysplasia Last Updated: January 14, 2004 Rate this Article Email to a Colleague Synonyms and related keywords: hereditary ectodermal dysplasia, ectodermal dysplasia syndrome, EDS, ED, ectodermal birth defect, ectoderm birth defect, ectodermal disorder, ectoderm disorder, hypohidrotic ectodermal dysplasia, hypohidrotic ED, hidrotic ectodermal dysplasia, hidrotic ED, anhidrotic ectodermal dysplasia, anhidrotic ED, facial defect, cleft lip, cleft palate, EEC syndrome, AEC syndrome, Rapp-Hodgkin syndrome, Hay-Wells syndrome, Christ-Siemens-Touraine syndrome, Clouston syndrome AUTHOR INFORMATION Section 1 of 11 Author Information Introduction Clinical Differentials ... Bibliography Author: Carola Duran-McKinster, MD , Head of the Department, Assistant Professor, Department of Pediatric Dermatology, National Institute of Pediatrics of Mexico Carola Duran-McKinster, MD, is a member of the following medical societies:

18. Anhydrotic Ectodermal Dysplasia Anhydrotic ectodermal dysplasia Oligodontia with conical teeth. For more information see the Online Mendelian Inheritance in Man (OMIM). http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

19. Anhydrotic Ectodermal Dysplasia Anhydrotic ectodermal dysplasia Oligodontia with conical teeth. For more information see. the Online Mendelian Inheritance in Man (OMIM). 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

20. MedlinePlus Medical Encyclopedia Ectodermal Dysplasia ectodermal dysplasia Contents of this page Illustrations. Alternative names. Definition. Causes, incidence, and risk factors. Symptoms http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

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