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Familial Adenomatous Polyposis

What is Familial Adenomatous Polyposis?

Familial Adenomatous Polyposis is a rare condition in which polyps form in the epithelium of the large intestine.

 

Familial Adenomatous Polyposis is a rare condition in which polyps form in the epithelium of the large intestine.
Acknowledgement of Familial Adenomatous Polyposis has not been added yet.
5.25http://www.orpha.net
Synonyms for Familial Adenomatous Polyposis has not been added yet.
Cause of Familial Adenomatous Polyposis has not been added yet.
Symptoms for Familial Adenomatous Polyposis has not been added yet.
Diagnosis of Familial Adenomatous Polyposis has not been added yet.
Diagnostic tests of Familial Adenomatous Polyposis has not been added yet
Treatments of Familial Adenomatous Polyposis has not been added yet.
Prognosis of Familial Adenomatous Polyposis has not been added yet.
Tips or Suggestions of Familial Adenomatous Polyposis has not been added yet.
References of Familial Adenomatous Polyposis has not been added yet.
MYH Associated polyposis Created by atholonian2000
Last updated 24 Jul 2013, 09:15 PM

Posted by atholonian2000
24 Jul 2013, 09:15 PM

I was diagnosed with MYH Associated polyposis syndrome about 7 months ago. I know that it is related to FAP and AFAP. I have been unable to find a support group in my area that specifically related to MAP. Does anyone in this forum have information to share. I have scoured the web and have found many useful websites with tons of information. But no support group. This was the closest I could find.

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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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MYH Associated polyposis

Created by atholonian2000 | Last updated 24 Jul 2013, 09:15 PM


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