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Anti-MAG Peripheral Neuropathy

What is Anti-MAG Peripheral Neuropathy?

Anti-MAG Peripheral Neuropathy is a rare disorder in which a person’s own immune system attacks cells that maintain a healthy nervous system.

 

Anti-MAG Peripheral Neuropathy is a rare disorder in which a person’s own immune system attacks cells that maintain a healthy nervous system.
Acknowledgement of Anti-MAG Peripheral Neuropathy has not been added yet.
Prevalence Information of Anti-MAG Peripheral Neuropathy has not been added yet.
Synonyms for Anti-MAG Peripheral Neuropathy has not been added yet.
Cause of Anti-MAG Peripheral Neuropathy has not been added yet.
Symptoms for Anti-MAG Peripheral Neuropathy has not been added yet.
Diagnosis of Anti-MAG Peripheral Neuropathy has not been added yet.
Diagnostic tests of Anti-MAG Peripheral Neuropathy has not been added yet
Treatments of Anti-MAG Peripheral Neuropathy has not been added yet.
Prognosis of Anti-MAG Peripheral Neuropathy has not been added yet.
Tips or Suggestions of Anti-MAG Peripheral Neuropathy has not been added yet.
References of Anti-MAG Peripheral Neuropathy has not been added yet.
anti-MAG peripheral neuropathy Created by NancyKay
Last updated 1 Sep 2012, 10:26 PM

Posted by NancyKay
1 Sep 2012, 10:26 PM

I am hoping to hear from someone with anti-MAG peripheral neuropathy who has found a treatment that has successfully controlled or slowed the progression of their symptoms. Any current clinical trials with new treatments?

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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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Diagnosed with MGUS 2013. Further diagnosed with anti mag peripheral neuropathy Jan 2015. About to undergo IVIG treatment.

 

I was diagnosed with anti-MAG peripheral neuropathy in 2002. I've had treatments with IVIg and rituximab without successfully controlling symptoms. I have significant ataxia & hand tremor. I'm...

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anti-MAG peripheral neuropathy

Created by NancyKay | Last updated 1 Sep 2012, 10:26 PM


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