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Greig Cephalopolysyndactyly Syndrome

What is Greig Cephalopolysyndactyly Syndrome?

Greig Cephalopolysyndactyly Syndrome is a rare disorder characterized by extra fingers and toes, widely spaced eyes and a flattish nose.

 

Greig Cephalopolysyndactyly Syndrome is a rare disorder characterized by extra fingers and toes, widely spaced eyes and a flattish nose.
Acknowledgement of Greig Cephalopolysyndactyly Syndrome has not been added yet.
Prevalence Information of Greig Cephalopolysyndactyly Syndrome has not been added yet.
Synonyms for Greig Cephalopolysyndactyly Syndrome has not been added yet.
Sometimes inherited. Sometimes is "spontaneous".
Symptoms for Greig Cephalopolysyndactyly Syndrome has not been added yet.
Diagnosis of Greig Cephalopolysyndactyly Syndrome has not been added yet.
Diagnostic tests of Greig Cephalopolysyndactyly Syndrome has not been added yet
Treatments of Greig Cephalopolysyndactyly Syndrome has not been added yet.
Prognosis of Greig Cephalopolysyndactyly Syndrome has not been added yet.
Tips or Suggestions of Greig Cephalopolysyndactyly Syndrome has not been added yet.
References of Greig Cephalopolysyndactyly Syndrome has not been added yet.
Greig cephalopolysyndactyly syndrome Created by courtney
Last updated 7 Apr 2022, 02:01 AM

Posted by Jennifer_West
7 Apr 2022, 02:01 AM

Hello, my daughter was born with GCPS but we did not have the diagnosis until recently and she will be 16 next month. 

Posted by courtney
14 Apr 2009, 01:40 AM

does anyone have chid(ren) with this syndrome. my son -

Peto institute conductive therapy Created by Avakellett1
Last updated 1 Oct 2012, 10:00 AM

Posted by Avakellett1
1 Oct 2012, 10:00 AM

Hi we are thinking of bringing Ava to the peto institute for conductive education to help with greigs syndrome and help her to walk , potty trained has anyone else done this type of therapy ?.

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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.

Enrolling is easy.

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  3. Answer the permission and data sharing questions.

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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Hi my daughter have has Greigs syndrome , she is 3 yrs old , crawling not walking , babbling not talking . As rare has the syndrome is Ava apparently is unique has the gene GLI3 is terminated in...
my son Greig cephalopolysyndactyly syndrome
Sister.
My name is Angela and I am the mother of a 21 month old boy with Greigs Cephalopolysyndactyly Syndrome. I also have another child with no syndrome at all, who is now 6 years old. I would love to...

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Greig cephalopolysyndactyly syndrome

Created by courtney | Last updated 7 Apr 2022, 02:01 AM

Peto institute conductive therapy

Created by Avakellett1 | Last updated 1 Oct 2012, 10:00 AM


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