Links and Resources for Paraneoplastic Patients and Caregivers
Please note: Clicking on the links below will take you away from the IPA site. To return, hit the back button on your browser. The IPA is not responsible for the information on the site linked before.
Paraneoplastic Resource Links
Athena Diagnostics is a medical laboratory that offers blood screening for the most common antibodies associated with paraneoplastic neurological disorders. Athena's site also has several good articles on PNDs, including the link listed immediately below.
The Importance of Diagnosing Paraneoplastic Disorders by Myrna Rosenfeld, M.D., PHD,is an excellent overview discussing the reasons why early diagnosis is important. Provides excellent information for both medical doctors and patients on when to suspect a paraneoplastic neurological disorder, and when to order diagnostic tests. Requires Adobe Pdf. reader.
PNSEURONET is a panel of European neurologists interested in paraneoplastic neurological disorders. The site is an incredible source of information about paraneoplastic neurological disorders, mainly aimed at helping neurologists diagnosis and classify PNDs.
The Mayo Clinic offers an excellent explanation of paraneoplastic disorders, plus a brief summary of research currently being conducted at Mayo.
Timothy Hain, M.D., a specialist in movement disorders, describes the various types of paraneoplastic neurological disorders, including a full description of the different antibodies associated with various PNDs.
The National Association for Neurological Disorders has a short, but informative, overview of paraneoplastic disorders on its web site.
EMedicine has many in-depth articles on paraneoplastic neurological disorders and their treatments. Search for "paraneoplastic." These articles are written primarily for medical doctors. They can be useful to download and give to your treating physician as background information.
Paraneoplastic Syndromes: An Unsolved Murder, by Michael R. Pranzatelli, is an excellent discussion of paraneoplastic neurological disorders affecting children.
The American Cancer Society provides a wealth of useful information on cancer treatments and support services.
The Association of American Cancer Institutes maintains a database of major U.S. cancer centers.
OncologyChannel has many useful articles about various forms of cancer, written in easy-to-understand language. Also information about clinical trials.
Breast Cancer Resources
the Y-Me National Breast Cancer Organization provides support and counseling for women with breast cancer. They also have a 24-hour hotline for questions related to breast cancer.
The American Society of Breast Surgeons is a good resource for help in finding a qualified breast surgeon.
Lungcanceronline is a comprehensive directory of information and links to information for lung cancer patients.
Lungcancer.org provides information and support services for lung cancer patients and health care professionals.
The National Ovarian Cancer Coalition offers support and information about ovarian cancer and treatments.
We Move is an organization that provides information about various movement disorders. Although paraneoplastic disorders are not specifically addressed, the site has useful information for paraneoplastic patients.
WheelChairNet is a terrific site with lots of product information and a discussion board about dealing with life when you are wheelchair bound.
The National Rehabilitation Association offers information on topics related to rehabilitation issues.
The National Center on Physical Activity and Disability has a terrific site on how to stay fit with disabilities. There`s a wealth of information here - while on the site, be sure to check out the seated fitness and strengthening exercise videos (free online) that people can do while seated.
New Mobility magazine is a magazine dedicated to discussing issues related to movement disorders.
The National Organizationon Disability is a great website on dealing with all aspects of living with a disability.
End of Life Issues
Hospicenet provides information about end of life issues and grieving for patients and their loved ones, links to local hospices.
General Medical Research Links
(With special thanks to Kirby Nielson!)
Merck Medicus is an excellent website for tracking down medical information with literally hundreds of paraneoplastic references. Tip: use Paraneoplastic in the search box, then select “All Merck Medicus”.
Omni Medical Search Type in Paraneoplastic for links to all of the information found in the mainline sources such as Web MD, Medline Plus etc. About 21 links to different sources of information.
Medline Plus Many links and articles about paraneoplastic disorders plus a good source of information about medications.
The National Institute of Neurological Disorders Type in Paraneoplastic in the Search Box. A good summary and links to other sources.