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.
Last updated 14 May 2019, 02:29 AM
| 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 |
Clinical Trials
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.
- Complete the screening form.
- Review the informed consent.
- 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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See Disorder Resources section on news article on FDA approved Lambert-Eaton treatment.
Created by RareshareTeam | Last updated 14 May 2019, 02:29 AM
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