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Lambert-Eaton Myasthenic Syndrome

What is Lambert-Eaton Myasthenic Syndrome?

Lambert-Eaton Myasthenic Syndrome is a rare autoimmune disorder which affects calcium delivery to the nerve-muscle junctions.

 

Lambert-Eaton Myasthenic Syndrome is a rare autoimmune disorder which affects calcium delivery to the nerve-muscle junctions.
Acknowledgement of Lambert-Eaton Myasthenic Syndrome has not been added yet.
1.0http://www.orpha.net
Synonyms for Lambert-Eaton Myasthenic Syndrome has not been added yet.
Cause of Lambert-Eaton Myasthenic Syndrome has not been added yet.
Symptoms for Lambert-Eaton Myasthenic Syndrome has not been added yet.
Diagnosis of Lambert-Eaton Myasthenic Syndrome has not been added yet.
Diagnostic tests of Lambert-Eaton Myasthenic Syndrome has not been added yet
Treatments of Lambert-Eaton Myasthenic Syndrome has not been added yet.
Prognosis of Lambert-Eaton Myasthenic Syndrome has not been added yet.
Tips or Suggestions of Lambert-Eaton Myasthenic Syndrome has not been added yet.
References of Lambert-Eaton Myasthenic Syndrome has not been added yet.
See Disorder Resources section on news article on FDA approved Lambert-Eaton treatment. Created by RareshareTeam
Last updated 14 May 2019, 02:29 AM

Posted by RareshareTeam
14 May 2019, 02:29 AM

Community External News Link
Title Date Link
Once free, drug for rare disease now being sold for $375K a year 02/11/2019
FDA approves first treatment for children with Lambert-Eaton myasthenic syndrome, a rare autoimmune disorder 05/12/2019
Who can afford that'? Patients face costly bills amid FDA's battle over 'orphan drugs' 02/20/2023
Rare disease rap: Patient advocate writes song to raise awareness 03/12/2023
Rare disease patients report great challenges in many areas of life 08/19/2023
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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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Lambert Eaton MG and Dysautonomia with POTS, Autoimmune Autonomic Neuropathy on IVIG treatments five days a month.
Hi. I am from Flagstaff, AZ, and have recently been diagnosed with Lambert Eaton Myasthenic Syndrome. I am hoping to connect with other who also have LEMS, to compare stories, symptoms, and in...
my husband has been diagnosed with lems, Lambert Eaton Myasthenic syndrome.

 

I need to know more about it & want to find someone in our area who also suffers from LEMS. Our Dr. can't find the...
I am 43 years old . A mother to three boys, 22, 18, 14. I love to read, sew, and my dogs

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