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Inclusion Body Myositis

What is Inclusion Body Myositis?

Inclusion Body Myositis is a rare inflammatory muscle disease.

 

Inclusion Body Myositis is a rare inflammatory muscle disease.
Acknowledgement of Inclusion Body Myositis has not been added yet.
0.49http://www.orpha.net
Synonyms for Inclusion Body Myositis has not been added yet.
Cause of Inclusion Body Myositis has not been added yet.
Muscle Weakness
Diagnosis of Inclusion Body Myositis has not been added yet.
Diagnostic tests of Inclusion Body Myositis has not been added yet
Treatments of Inclusion Body Myositis has not been added yet.
Prognosis of Inclusion Body Myositis has not been added yet.
Tips or Suggestions of Inclusion Body Myositis has not been added yet.
References of Inclusion Body Myositis has not been added yet.
looking for others who have this Created by cece5454
Last updated 12 Nov 2012, 05:17 AM

Posted by cece5454
12 Nov 2012, 05:17 AM

I have MS daughter under going tesing they think she may have IBM. Can nyone share their experience ? Thank you

Myositis Awareness Walk Created by myonurse
Last updated 4 Oct 2010, 04:51 PM

Posted by myonurse
4 Oct 2010, 04:51 PM

Hello Everyone, Anyone living in the Maryland, DC area I would just like to invite you to the Myositis Awareness Walk this Saturday, October 9th at Centennial Park in Columbia Maryland. The walk will begin at 8am. Hope to see you there.

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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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looking for others who have this

Created by cece5454 | Last updated 12 Nov 2012, 05:17 AM

Myositis Awareness Walk

Created by myonurse | Last updated 4 Oct 2010, 04:51 PM


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