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Paramyotonia Congenita

What is Paramyotonia Congenita?

Paramyotonia Congenita is a rare neuromuscular disorder characterized by myotonia that becomes worse with exercise.

 

Paramyotonia Congenita is a rare neuromuscular disorder characterized by myotonia that becomes worse with exercise.
Acknowledgement of Paramyotonia Congenita has not been added yet.
Prevalence Information of Paramyotonia Congenita has not been added yet.
Synonyms for Paramyotonia Congenita has not been added yet.
Cause of Paramyotonia Congenita has not been added yet.
Symptoms for Paramyotonia Congenita has not been added yet.
Diagnosis of Paramyotonia Congenita has not been added yet.
Diagnostic tests of Paramyotonia Congenita has not been added yet
Treatments of Paramyotonia Congenita has not been added yet.
Prognosis of Paramyotonia Congenita has not been added yet.
Tips or Suggestions of Paramyotonia Congenita has not been added yet.
References of Paramyotonia Congenita has not been added yet.
Anyone with this disorder Created by Laurelee
Last updated 9 Mar 2013, 12:44 AM

Posted by allyq
9 Mar 2013, 12:44 AM

Laurelee, I realize this was a long time ago but now there is two . . . you still here???

Posted by Laurelee
12 Jan 2011, 10:51 PM

I would love to talk to someone else with this disorder

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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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I'm student. 21 Years old
I am 42 years old and have been diagnosed with Paramyotonia Congentia approx 2 years ago, My son who is 14 years old has been diagnosed also. I am looking to talk to some people with my disorder...
I have paramyotonia congenita and am tired of chronic muscle pain.

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Anyone with this disorder

Created by Laurelee | Last updated 9 Mar 2013, 12:44 AM


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