Amyloidosis is a rare bone marrow disease characterized by the buildup of amyloid proteins in the organs.
Amyloidosis is a rare bone marrow disease characterized by the buildup of amyloid proteins in the organs.
Swelling of ankles and legs, Weakness, Weight loss, Shortness of breath, Numbness or tingling in hands or feet, Diarrhea, Severe fatigue, enlarged tongue, Skin changes, irregular heartbeat, Difficulty swallowing
Amyloid can be diagnosed by microscopic examination of affected tissue.
The Amyloidosis Foundation's annual 'Run for Your Life' is less than a month away! This important fundraiser will raise money for medical research and patient programs. Visit https://secure.qgiv.com/for/nuffgh/event/792143 to register for the October 13th event.
Hi Some physicians conceptualize light chain deposition disease or disorder LCDD as a form of amyloidosis. If any member of this community know somebody who has LCDD, sometimes the disease is called kappa light chain deposition disease, please have them join the light chain deposition disease community Thanks B
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.
attacked his heart and has made it like a tough piece of
steak. He shortness of breath, weakness and can't hold
out to walk...
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Created by RareshareTeam | Last updated 18 Sep 2018, 11:19 PM
Created by barberjp | Last updated 8 Jan 2010, 10:11 PM
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