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Ectrodactyly-Ectodermal Dysplasia-Cleft Syndrome

What is Ectrodactyly-Ectodermal Dysplasia-Cleft Syndrome?

Ectrodactyly-ectodermal dysplasia-cleft syndrome is a rare disorder characterized by ectrodactyly, ectodermal dysplasia, and facial clefting.

 

Ectrodactyly-ectodermal dysplasia-cleft syndrome is a rare disorder characterized by ectrodactyly, ectodermal dysplasia, and facial clefting.
Acknowledgement of Ectrodactyly-Ectodermal Dysplasia-Cleft Syndrome has not been added yet.
Prevalence Information of Ectrodactyly-Ectodermal Dysplasia-Cleft Syndrome has not been added yet.
Synonyms for Ectrodactyly-Ectodermal Dysplasia-Cleft Syndrome has not been added yet.
Cause of Ectrodactyly-Ectodermal Dysplasia-Cleft Syndrome has not been added yet.
Symptoms for Ectrodactyly-Ectodermal Dysplasia-Cleft Syndrome has not been added yet.
Diagnosis of Ectrodactyly-Ectodermal Dysplasia-Cleft Syndrome has not been added yet.
Diagnostic tests of Ectrodactyly-Ectodermal Dysplasia-Cleft Syndrome has not been added yet
Treatments of Ectrodactyly-Ectodermal Dysplasia-Cleft Syndrome has not been added yet.
Prognosis of Ectrodactyly-Ectodermal Dysplasia-Cleft Syndrome has not been added yet.
Tips or Suggestions of Ectrodactyly-Ectodermal Dysplasia-Cleft Syndrome has not been added yet.
References of Ectrodactyly-Ectodermal Dysplasia-Cleft Syndrome has not been added yet.
ectodermal dysplasia Created by jndm
Last updated 9 Feb 2013, 04:57 AM

Posted by bcasteel0001
9 Feb 2013, 04:57 AM

Thank you, I put in a request to join your group on facebook!

Posted by Rebelheart70
9 Feb 2013, 04:18 AM

Hello everyone! My name is Mario and I'm the translation responsable for the p63 EEC International association based in Italy. Please feel free visiting our website www.sindrome-eec.it . We are here for you and we are glad to help you answering all your questions. If you want to contact us, please write to mario.adamo@bluewin.ch or presidenza-international@sindrome-ecc.it . Like I've said, we would be glad to hear from you. Peace and love <3

Posted by bcasteel0001
8 Feb 2013, 04:10 AM

I noticed that it has been awhile since you have gotten on this site i am hoping that you are still current... my granddaughter was born Jan 16th and even tho i am in the nursing field i had never heard of ECC syndrome maybe someone can enlighten me and the trials and tribulations of this rare issue.

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CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

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After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit sanfordresearch.org/CoRDS to enroll.

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I am the MiMi, My granddaughter was born Jan. 16th with a bilateral cleft lip and palette. She also has "lobster claw" on her right hand. So far they are not totally sure if she has EEC Syndrome......
I'm grandmother for baby boy who was born with two fingers in the rigth hand
well this is for my daughter she is gonna be 4 months old.. and i was looking 2 see other people that has the same condition as my daughter, so i have a better understanding on the condition
hi my name is mary ann castillo. i have a 14 month old daughter who has ectrodactyly-ectodermal dysplasia cleft syndrome. I dont know alot about this syndrome. were we are from so far she is the...
My husband and I have a 2 and a half year old boy, we have been searching for 2 yrs to find answers for his problems and after many Doctors they have diagnosed him with ectodermal dysplasia and...

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ectodermal dysplasia

Created by jndm | Last updated 9 Feb 2013, 04:57 AM


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