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Chromosome 18q Deletion Syndrome

What is Chromosome 18q Deletion Syndrome?

 

An description of Chromosome 18q Deletion Syndrome has not been added yet.
Acknowledgement of Chromosome 18q Deletion Syndrome has not been added yet.
Prevalence Information of Chromosome 18q Deletion Syndrome has not been added yet.
Synonyms for Chromosome 18q Deletion Syndrome has not been added yet.
Cause of Chromosome 18q Deletion Syndrome has not been added yet.
Symptoms for Chromosome 18q Deletion Syndrome has not been added yet.
Diagnosis of Chromosome 18q Deletion Syndrome has not been added yet.
Diagnostic tests of Chromosome 18q Deletion Syndrome has not been added yet
Treatments of Chromosome 18q Deletion Syndrome has not been added yet.
Prognosis of Chromosome 18q Deletion Syndrome has not been added yet.
Tips or Suggestions of Chromosome 18q Deletion Syndrome has not been added yet.
References of Chromosome 18q Deletion Syndrome has not been added yet.
Newest Member Created by ababineau
Last updated 18 Feb 2010, 12:29 AM

Posted by ababineau
18 Feb 2010, 12:29 AM

Just thought I'd introduce myself - I have 2 daughters, one of which has a deletion on her 18th chromosome. This is a fairly new diagnosis (7mos) so we are still figuring a lot of stuff out! Looking to connect with other families affected by this as well and learn as much as we can!

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Cords registry

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.

  1. Complete the screening form.
  2. Review the informed consent.
  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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I am the mother to three beautiful children. My second child, Ella, was born with 18q deletion syndrome. At birth, she weighed 5lbs4oz. She was born with an ASD, low muscle tone, and also failed...
I am the mother of a 16 month old daughter with a Chromosome 18q deletion / Trisomy 10p. We are looking to share our experiences and hopefully learn from others affected by this chromosomal...
I am a mom to Corissa, chromosome 18q del 21.3. I was just looking for another site to comunicate with other parents.

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Newest Member

Created by ababineau | Last updated 18 Feb 2010, 12:29 AM


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