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Glycogen Storage Disease Type 2

What is Glycogen Storage Disease Type 2?

Glycogen Storage Disease Type 2 is a rare, autosomal recessive metabolic disorder.

 

Glycogen Storage Disease Type 2 is a rare, autosomal recessive metabolic disorder.
Acknowledgement of Glycogen Storage Disease Type 2 has not been added yet.
1.1http://www.orpha.net
Synonyms for Glycogen Storage Disease Type 2 has not been added yet.
Cause of Glycogen Storage Disease Type 2 has not been added yet.
Symptoms for Glycogen Storage Disease Type 2 has not been added yet.
Diagnosis of Glycogen Storage Disease Type 2 has not been added yet.
Diagnostic tests of Glycogen Storage Disease Type 2 has not been added yet
Treatments of Glycogen Storage Disease Type 2 has not been added yet.
Prognosis of Glycogen Storage Disease Type 2 has not been added yet.
Tips or Suggestions of Glycogen Storage Disease Type 2 has not been added yet.
References of Glycogen Storage Disease Type 2 has not been added yet.
pompe disease Created by angels
Last updated 2 Apr 2014, 09:46 PM

Posted by angels
2 Apr 2014, 09:46 PM

I was just diagnosed with pompe disease. Still learning about it.

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The Association for Glycogen Storage Disease

This website provides basic information about the glycogen storage diseases. The information is intended to be of use to people affected by one of the glycogen storage diseases, their families, and other interested parties.

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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pompe disease

Created by angels | Last updated 2 Apr 2014, 09:46 PM


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