Ectodermal Dysplasias International Registry

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Participating Organizations

 
Australia
Email This e-mail address is being protected from spambots. You need JavaScript enabled to view it
Web Site www.ozed.org.au
 
ozED – Australian Ectodermal Dysplasia Support Group is a volunteer ran organization who provides support, information and education to people and families affected by Ectodermal Dysplasia (ED). We provide lobbying, advocacy, family days, a national conference and other support services. We have state representatives in most states and also welcome members from outside Australia (particularly in our region where groups do not exist).
Austria, Germany www.ektodermale-dysplasie.de
Vereinsadresse:
Selbsthilfegruppe Ektodermale Dysplasie e.V.
Andrea Burk
Landhausweg 3
D- 72631 Aichtal
 
The patient support group was founded 1991 - actually there are approximately 160 families which are members. The group covers the German speaking countries Germany, Austria and Switzerland. The objectives are exchanges of experiences and information for families and affected people. We offer assistance and supportin order to make possible a normal life.
 
Information of the public about the rare disorder as well as collaboration with our medical advisory board and the resulting for research out of it are main goals of our group. We are convinced that it is very important to maintain contact and exchange information and experiences with the international groups – this makes us feeling that we all belong to one big ed-family!
 
Adresse für Auslandskontakte:
Ulrike Holzer
Pantlitschkogasse 5
A- 1230 Wien
Netherlands, Belgium, Luxemborg Ectodermale Dysplasie
Telephone + 31 (0) 182-583545
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Web Site http://ednl.webklik.nl
Hyves http://ectodermaledysplasie.hyves.nl
 
Ectodermale Dysplasie is an organization for the Netherlands and Belgium. Our target is to offer (practical) help to people and their families with (all forms of) Ectodermal Dysplasia.
France Association Française des Dysplasies Ectodermiques
Web Site www.afde.net
 
AFDE is connected with health specialists and has created a network for every ectodermal dysplasia needs. We pay treatments and organize and pay summer holidays camp to ED kids. We are involved with research and we learn everyday from our hundreds of families.
Italy
Associazione A.N.D.E.
Via Cascina Fidelina,19
20061 Carugate (MI)
Tel.Fax 02 92150556
P.I.: 94029540153
 
The ANDE Association was born in November 1999. Its aims are social solidarity, assistance and protection civil the rights for ectodermal dysplasia sick people. These aims are achieved by the collection of information concerning all the suitable therapies for this syndrome, the organization and the promotion of meetings, and by the study of this syndrome.
 
The Association wants to awaken the public opinion for what concerns the existence of ectodermal dysplasia and, above all, wants to promote by the Public Board initiatives for consultation and assistance towards the sick people and their families.
Mexico ASOCIACIÓN MEXICANA DE DISPLASIA ECTODÉRMICA MARIANA, A.C.
Phone 722 2 80 15 57
Web Site www.amdem.og.mx
 
Asociación Mexicana de Displasia Ectodérmica Mariana, A.C. AMDEM (Mexican Association of Ectodermal Dysplasia Mariana, A.C) it’s a civil association that arise in union of 13 international groups of help.
  Norwegian Norsk ED forening
Phone 0047 976 76 460
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Web Site www.norskedforening.no
 
We are a new organization in Norway with about 35 members. Our goal is to make a good and well functional web-page with information on the diagnose, help with the government/social health care, and to bring people affected by ED and their families together.
Spain Asociación de afectados por displasia ectodérmica (A.A.D.E.)
Phone 626267988/968350026
Email This e-mail address is being protected from spambots. You need JavaScript enabled to view it
Web Site www.displasiaectodermica.org
 
“It is an Association without spirit of profit, which ends (purposes) are to promote and to realize all kinds of activities that help to improve the quality of life of the persons affected for ectodermal dysplasia,
and to work for families and social integration”
Turkey Ektodermal Displazi Grubu – Türkiye
Phone +90 412 248 81 01 - 04
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Web Site http://www.ektodermaldisplazi.com/
 
Our main aims are, Getting cooperation with international groups for research opportunity and develop of knowledge. Prepare one book in English and Turkish which will be about ED. Holding annual national and international conferences in Turkey. Prepare some sheet and pamphlets which will give information about ED to the cases and physicians.
United Kingdom
The Ectodermal Dysplasia Society
Phone +44 (0) 1242 261332
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Website www.ectodermaldysplasia.org
  • Provides information, advice, support to those affected by ectodermal dysplasia
  • Promotes the education of the medical profession and general public
  • Supports research
  • Liaises with the Charity’s Medical Advisory Board
  • Supports members in negotiations for financial aid/other services
  • Encourages network for mutual support
  • Produces regular newsletter
  • Maintains website
  United States National Foundation for Ectodermal Dysplasias
Mascoutah, IL 62258-0114
Phone 618-566-2020
Fax 618-566-4718
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Web Site www.nfed.org
 
The mission of the NFED is to be the authoritative resource for information on ectodermal dysplasia syndromes, to provide services that meet the needs of affected individuals and their families and to support research. Located in Mascoutah, Illinois, the Foundation is in contact with more than 5,200 families in 68 countries. $.86 of every dollar raised is spent on family services, education, treatment assistance, and research.