Dravet Syndrome is a rare epileptic encephalopathy classified in 1989 by the International League Against Epilepsy (ILAE) as a "syndrome undetermined as to whether seizures are focal or generalized" and more recently as a "genetic and developmental epilepsy syndrome with onset in infancy."
The International Dravet syndrome Epilepsy Action League (IDEA League) is committed to promoting awareness of Dravet syndrome and the need for early diagnosis and appropriate treatment for this catastrophic disorder. Formed by a group of parents and backed by leading medical experts, including Dr. Charlotte Dravet, the IDEA League is the only organization in the world dedicated to providing services, resources and support specifically for children with Dravet syndrome and their families. The IDEA League is committed to family and professional education, as well as supporting research towards a cure for Dravet syndrome. Our website offers private on-line support forums for families and caregivers in three languages (English, Spanish and French). Here, members can exchange information and receive advice from other families from around the world dealing with the same issues and concerns. By joining our mailing list, you will receive quarterly newsletters with the latest news, developments and research in Dravet syndrome. I invite you to visit our website to learn more at www.idea-league.org. Sincerely, Mary Anne Meskis Executive Director
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.
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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Created by shannon.ashoori | Last updated 13 Jul 2020, 05:25 AM
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