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Corpus Callosum Agenesis Neuronopathy

What is Corpus Callosum Agenesis Neuronopathy?

Corpus Callosum Agenesis Neuronopathy is a rare disorder characterized by a delay in developmental milestones.

 

Corpus Callosum Agenesis Neuronopathy is a rare disorder characterized by a delay in developmental milestones.
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agenisis of corpus collosum Created by aurspruch
Last updated 25 Apr 2019, 07:35 AM

Posted by Gselma19
25 Apr 2019, 07:35 AM

Posted by Gselma19
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Posted by Kens_Dad
29 Mar 2017, 06:54 AM

Links to some of the stuff I mentioned on my previous post.  FYI / Gil.

CORD =  https://www.raredisorders.ca/

Link on ACC Network re social skills = http://agenesiscorpuscallosum.blogspot.ca/2009/08/agenesis-of-corpus-callosum-social.html

I wish I had known to spend more effort on social skills when Ken was younger.  From around 12 years old to young adult, kids typically develop faster processing through their corpus callosum (CC).  This results in faster thinking; talking and more complex thoughts and conversation.  However, our ACC kids don't have a CC to get faster..., so they seem to start falling further behind.  So look at the social skills advice above and start working on it sooner.  The adult version is:  http://agenesiscorpuscallosum.blogspot.ca/search/label/Adults%20with%20ACC

http://nodcc.org/about/    this is the Nat'l Organization for Disorders of the Corpus Callosum -- excellent resources here

ACC-Listserv E-Mail Support Group   http://agenesiscorpuscallosum.blogspot.ca/2010/01/acc-listserv-e-mail-support-group.html

ACC Awareness Association Message Board = http://accawareness.proboards.com/

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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.

  1. Complete the screening form.
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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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agenisis of corpus collosum

Created by aurspruch | Last updated 25 Apr 2019, 07:35 AM


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