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Marfan Syndrome

What is Marfan Syndrome?

Marfan Syndrome is a genetic disorder affecting roughly 200,000 Americans caused by mutations in the FBN1 gene.

 

Marfan Syndrome is a genetic disorder affecting roughly 200,000 Americans caused by mutations in the FBN1 gene.
Acknowledgement of Marfan Syndrome has not been added yet.
30.0http://www.orpha.net
Synonyms for Marfan Syndrome has not been added yet.
Cause of Marfan Syndrome has not been added yet.
Symptoms typically include disproportionally long limbs, fingers and body structure. Additionally there is a higher possibly of cardiovascular abnormalities and issues pertaining to the eyes, lungs, and central nervous system associated with Marfan Syndrome.
Diagnosis of Marfan Syndrome has not been added yet.
Diagnostic tests of Marfan Syndrome has not been added yet
While there are currently no cures for Marfan Syndrome, the symptoms that may arise can be independently managed to promote a healthy life. Regular checkups are suggested to manage the symptoms and complications they may arise.
Prognosis of Marfan Syndrome has not been added yet.
Tips or Suggestions of Marfan Syndrome has not been added yet.
References of Marfan Syndrome has not been added yet.
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Community External News Link
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Community Resources
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National Marfan Fondation

The NMF is dedicated to saving lives, and improving the quality of life for individuals and families affected by the Marfan syndrome and related disorders.

03/20/2017

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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