The following are a select few of many sites displaying information on Cold Agglutinin Disease (or one of its other names). Many of these are written for the medical profession, but much of the material can be understood by a layperson.
Some of the files referenced on this page are “pdf” files which require you to have Adobe Reader installed on your computer to view them.
Important Papers and Articles
Where to find more information on some Medical Terms and Medications
Rituximab, sold under the trade names Rituxan and MabThera, is a chimeric monoclonal antibody against the protein CD20, which is primarily found on the surface of B cells. It can therefore destroy B cells. Rituximab is used in the treatment of many lymphomas, leukemias, transplant rejection and some autoimmune disorders.
Fludarabine is a cancer medication that interferes with the growth and spread of cancer cells in the body.
Warm Heart Surgery for those with Cold Agglutinin Disease
This link describes the measures taken to carry out a heart bypass operation on a 63 year old patient with CAD.
NORD – National Organization for Rare Disorders, in the USA. Similar organizations exist in some other countries, such as CORD in Canada. They classify a rare disorder as……. There are over 1,000 of them.
Bing Center for Waldenström’s Research/ Dana Farber/Harvard Cancer Center in Boston Massachusetts has been established in an effort to advance understanding of the cause of Waldenström’s Macroglobulinemia, and to pursue novel therapies. They have relevant information on their site for all those with Cold Agglutinin Disease.
Waldenström’s Macroglobulinemia – Research, Treatment, Support. Dr. Steve Treon’s personal website where there’s excellent current information regarding Rituxan and other new treatment options, clinical trials, hematology publications, and research.
For research information, you may search PubMed at www.pubmed.gov.
PubMed is a service of the U.S. National Library of Medicine and the National Institutes of Health.
PubMed consists of abstracts from medical journals.
At this site, you can enter the key phrase “cold agglutinin disease” in the search engine bar.
Medline Plus: www.nlm.nih.gov/medlineplus/
Blood Journal: www.bloodjournal.org
Select Search for Articles, then on the Specify Citation line enter Year = 2004 Volume = 103 First page = 2925 to get an excellent article covering a study done in Norway by Sigborn Berentsen and others
Also try Year = 2002 Volume = 100 First Page = 1922
Also try entering in the Abstract/Title box the word “rituximab” or “cold agglutinin”.
Raynaud’s Phenomenon: http://www.nih.gov/news/WordonHealth/apr2001/story02.htm
Type Raynauds into Google for many other sites.
Winter Weather FAQs: http://www.bt.cdc.gov/disasters/winter/faq.asp
Cold Agglutinin Disease: www.emedicine.com/med/topic408.htm
authored by Dr Rajalaxmi McKenna & Dr Harry L Messmore (who is mentioned in Bea’s Story)
Cold Agglutinin Disease: http://emedicine.com/ped/topic429.htm
How blood works: http://health.howstuffworks.com/blood2.htm
What’s your blood type: www.fi.edu/biosci/blood/types.html
From the children in Mrs Kennedy’s Classroom:
Image Collection: Human Anatomy
Search Engines: such as www.google.com allow you to get lots of information about Cold Agglutinin Disease
Medic Alert: www.medicalert.org
American Autoimmune Related Diseases: www.aarda.org
American Institute for Research and Education: www.anemiainstitute.org
Autoimmunity Research Foundation: www.autoimmunityresearch.org/index.html
National Heart Lung and Blood Institute: www.nhlbi.nih.gov
Always worth checking to see if any studies are being done on CAD: www.clinicaltrials.gov
American Society of Hematology: www.hematology.org
Merck Manual Home edition: www.merck.com/mmhe
Rituximab-How it Works and Why Resistance Occurs by Sue Herms “TORCH” International Waldenstrom’s Macroglobulinemia Foundation Newsletter. Go to: http://www.iwmf.com/TorchNewsletter/index.htm then click on Fall 2008. The article is on Pages 9-11.
New Anti-CD20 Monoclonal Antibodies by Sue Herms “TORCH” International Waldenstrom’s Macroglobulinemia Foundation Newsletter Go to: http://www.iwmf.com/TorchNewsletter/index.htm then click on Winter 2009. The article is on Pages 2-4
Celebrate International Rare Disease Day – February 28th
Rare Disease Day was established in 2008 to raise awareness about rare diseases, which impact millions of people worldwide. It also highlights the importance of research to develop diagnostics and treatments to address unmet medical needs. On February 28, 2011, the 4th International Rare Disease Day will be commemorated in the USA with a day-long program highlighting the various rare disease research activities supported by the National Institutes of Health (NIH) Office of Rare Diseases Research, the NIH Clinical Center, the NIH Institutes and Centers, the Health Resources and Services Administration (HRSA), the Food & Drug Administration’s Office of Orphan Product Development (OOPD), the National Organization for Rare Disorders (NORD), and the Genetic Alliance. For further information go to: (http://rarediseases.info.nih.gov/RareDiseaseDay.aspx)
In recognition of Rare Disease Day, FDA will launch a new set of web pages.
(http://www.fda.gov/forindustry/developingproductsforrarediseasesconditions/oopdnewsarchive/ucm385498.htm) which will include the personal stories of individuals with rare diseases, giving these patients a greater voice. Links from the page will provide additional information about the offices and programs within FDA that help address the unmet medical needs of patients with rare diseases.