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Hereditary Inclusion Body Myopathies

What is Hereditary Inclusion Body Myopathies?

Hereditary Inclusion Body Myopathies are a group of rare genetic disorders causing progressive muscle wasting and weakness beginning in young adults.

 

 

 

 

Hereditary Inclusion Body Myopathies are a group of rare genetic disorders causing progressive muscle wasting and weakness beginning in young adults.

 

 

 

Acknowledgement of Hereditary Inclusion Body Myopathies has not been added yet.
Prevalence Information of Hereditary Inclusion Body Myopathies has not been added yet.
Synonyms for Hereditary Inclusion Body Myopathies has not been added yet.
Cause of Hereditary Inclusion Body Myopathies has not been added yet.
Symptoms for Hereditary Inclusion Body Myopathies has not been added yet.
Diagnosis of Hereditary Inclusion Body Myopathies has not been added yet.
Diagnostic tests of Hereditary Inclusion Body Myopathies has not been added yet
Treatments of Hereditary Inclusion Body Myopathies has not been added yet.
Prognosis of Hereditary Inclusion Body Myopathies has not been added yet.
Tips or Suggestions of Hereditary Inclusion Body Myopathies has not been added yet.
References of Hereditary Inclusion Body Myopathies has not been added yet.
My friend Zuke Created by Myrick1975
Last updated 19 Aug 2016, 11:15 PM

Posted by Myrick1975
19 Aug 2016, 11:15 PM

My friend Zuke has hereditary inclusion myopathy he is 46 years old and has a 12-year-old daughter. He lives in the assisted living place that I work at I really would like for him to know other people who have this as his father had it that passed away . Maybe other people going through this could help make him feel better and maybe get some answers on what he could do to treat certain problems .

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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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My friend Zuke

Created by Myrick1975 | Last updated 19 Aug 2016, 11:15 PM


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