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Welcome to our website for Cold Agglutinin Disease patients and their families! Created in February 2007, by 3 CAD patients who met through NORD ( National Organization for Rare Disorders), it is our goal to offer information, support and encouragement to the CADdy Community.
FLASH!
CLINICAL TRIALS for CAD Sponsored by SANOFI GENZYME
The CAD Studies are now recruiting adults ages 18 and older with primary cold agglutinin disease (CAD). The purpose of the CAD Studies is to determine the safety and effectiveness of an investigational medication when compared to placebo for primary CAD. Individuals will be evaluated to determine their eligibility to participate. The investigational medication, study-related medical exams, and study-related laboratory tests will be provided to participants at no cost.
A special website has been created to provide more information about the CAD Studies. This site includes information on what to expect if you are enrolled and provides a list of participating research sites. Talk to your doctor and visit:
https://CADStudies.com or https://clinicaltrials.gov/
to learn more.
This information is sponsored by Sanofi Genzyme.
Who are we?
The information and views expressed on this site are those of non-medical people, all of whom have Cold Agglutinin Disease (CAD), a type of Autoimmune Hemolytic Anemia. At times we have used medical terminology. We have tried to be as accurate as we can in presenting this information.
Always check with your doctor before making any medical decisions since he/she best knows your case.
Due to the deep sense of isolation each of us experienced upon diagnosis, we felt that a site would be helpful where Cold Agglutinin Disease sufferers (we are going to call ourselves ‘CADdys’) could obtain information, and “talk” to each other. It certainly would have been beneficial to us, especially during the early years while we adjusted our lives to the new “Rules” we now live by.
What is this Disease we are Talking About?
Cold Agglutinin Disease CAD is also known by a number of other names:
- Autoimmune Hemolytic Anemia (Anaemia)
- Cold Agglutinin Autoimmune Hemolytic Anemia (Anaemia) (CAIHA)
- Cold Haemagglutinin Disease (CHD)
- Coombs Positive Hemolytic Anemia (Anaemia)
- Primary Chronic Cold Agglutinin Disease
Other references include:
- Cold-Antibody Disease
- Idiopathic Autoimmmune Hemolytic Anemia (Anaemia)
- Immune-mediatd Hemolytic Anemia (Anaemia) (IMHA)
You can use the various search engines such as Google, Bing etc. to access these names and find a wealth of information.
The statistics on the prevalence of Cold Agglutinin Disease are not precise, however, it is believed that it affects about 1 in 60,000 people, according to the Norway study of 86 CAD patients.
Actually you are a millionaire! The rate of incidence is about 1 in one-million per year. So in a country of 8 million, you can expect to get 8 new cases of CAD each year…….look for them when you next visit your Doctor……
What does this Website offer?
We offer some suggestions on how you can help yourself in everyday situations, give you more details about Cold Agglutinin Disease, provide some of our “stories”, and give you news about changes occurring in the CAD world. Also, take a look at our Links page for additional sites which you may find of interest.
We try to keep you informed about the latest medical information regarding CAD including the new clinical trials. We suggest you have a look at the following pages:
- News
- Managing CAD
- Medical Terms
- Our Stories
- Contact us
- and much more…
How can I ask questions?
Cold Agglutinin Disease Foundation Chat on Facebook.com, our closed group exclusively for CAD Patients and Family, where you can directly interact with 900+ other Members from around the world. PLEASE ASK TO JOIN US THERE. https://www.facebook.com
And please use the Contact Us page! We would really like to hear from you!
