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Hirschsprung Disease

What is Hirschsprung Disease?

Hirschsprung Disease is a rare disorder characterized by the enlargement of the colon due to bowel obstruction.

 

Hirschsprung Disease is a rare disorder characterized by the enlargement of the colon due to bowel obstruction.
Acknowledgement of Hirschsprung Disease has not been added yet.
20.0http://www.orpha.net
Synonyms for Hirschsprung Disease has not been added yet.
Cause of Hirschsprung Disease has not been added yet.
Symptoms for Hirschsprung Disease has not been added yet.
To determine if a person has Hirschsprung Disease, doctors can perform a biopsy, barium enema x ray, or a manometry.
Diagnostic tests of Hirschsprung Disease has not been added yet
Surgical removal of the affected section of the colon.
Prognosis of Hirschsprung Disease has not been added yet.
Tips or Suggestions of Hirschsprung Disease has not been added yet.
References of Hirschsprung Disease has not been added yet.
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Community External News Link
Title Date Link
Rare Gut Condition A Model For Study Of Genetic Diseases 04/12/2019
Girl with rare disease beats the odds to celebrate 5th birthday 01/14/2023
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Clinical Trials


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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Community User List

i am nana to jacob aged 4yrs old who has tchd, malrotation and other problems, he has an illeostomy and a mucas fistula and is doing quite well at the minute
I'm the Mommy to Kaden who has been diagnosed with Hirschsprung's in 2008 about two weeks after he was born because we wasn't eating very well. He was getting really fussy. So we took him in to the...
Hello. My name is Angela. I'm joining this board to see if there are any groups dedicated to assisting families of children w/ Hirschsprung's. A close family friend has a 3-yr old daughter with...
I'm a doctoral student at Ohio University-Athens. I'm working on my degree in Media Arts.

 

 

I was diagnosed with Hirschsprung disease when I was 14. I was told it was very rare to have a...

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