Essential Tremor is a progressive neurological disorder characterized by shaking of hands and other parts of the body.
|Rhythmic tremor||A rhythmic tremor is only present when the affected muscle is exerting effort.|
|Dysphonia||A raspy speaking voice|
|Progressive loss of fine motor skills||Progressive loss of fine motor skills|
I have had ET all my life, and have suffered the stigma that goes along with it. The biggest problem I have had, is that most people mistake my condition with my being 'hungover' all the time. Another huge issue for me, is that I am discounted from careers of choice, such as being a pilot, or a police officer. Both careers I always dreamed of getting into. It is a very hard life, but harder still with this disease! Anyone out there with the same problems?
|National Tremor Foundation||
The website of the National Tremor Foundation.
|International Essential Tremor Foundation||
The International Essential Tremor Foundation (IETF) was created to provide information, services and support to individuals and families affected by essential tremor (ET).
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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