Multiple Myeloma is a rare type of cancer of plasma cells. It is also known as bone marrow cancer or as one of the blood cancers.
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Joseph | Before you make any decisions, first determine if you really want to survive the illness, and for your own reasons - not for somebody else. Then, find a copy of "The Cancer Conqueror" by Greg Andersen. Read it. Then get a copy of "50 Things to do When the Doctor Says 'It's Cancer,'" also by Greg Anderson. Read it. Then join a peer support group and listen to the long-term survivors of all kinds of cancers who will tell you all the normal things they do with their lives: vacations, house buying, gardens, traveling, working, and so on. They are living with, not dying of, cancer. Then do your thing. |
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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.
Diagnosed with Systemic Capillary Leak Syndrome after several years of attacks starting around age 46. I'm currentl 52, residing in St. Louis, MO, US.
I also have Meniere's Disease, slight...
I am a french woman who suffers capillary leak syndrome.
Doctors diagnosed two weeks ago .
I would like to discuss with you because there is no forum about this ill in...
My first episode was in 2008. I was misdiagnosed with anaphylaxsis up until fall 2011. I started IVIG treatment in February 2012. Since then, I have had no episodes. I am now on bi-weekly...
Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.
Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.
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Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.
FIND YOUR COMMUNITYOur rare disease resources include e-books and podcasts
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.