Amyotrophic Lateral Sclerosis is a progressive neurodegenerative disease caused by the degeneration of motor neurons.
|isisRGIIntern||Due to dysphagia, eating may become a problem. However, adequate nutrition and fluids can be obtained with use of a gastric feeding tube and vitamin therapy. Physical therapy would also help maintain joint flexibility and prevent muscle contractures. Communication devices such as artificial speech articulation, “The Talking Board”, and the “Etran Board” would be useful for people who have lost their ability to speak.|
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|ALS Therapy Development Institute||
The ALS Therapy Development Institute is a nonprofit biotechnology company discovering treatments for patients alive today. Our approach combines the power of a nonprofit mission with the best practices of a for-profit biotechnology company: rigorous, open-minded research and proven drug development techniques.
|The ALS Association||
The ALS Association relentlessly pursues its mission to help people living with ALS and to leave no stone unturned in search for the cure of the progressive neurodegenerative disease that took the life and name of Baseball Legend Lou Gehrig.
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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Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.
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Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.