"No one can face illness and its vicissitudes alone. Above all, the patient needs companions who can reliably educate, support and guide her...AfterShock can serve as another important companion."
— Jerome Groopman, MD, Dina and Raphael Recanati Professor, Harvard Medical School
This appendix provides a list of the major disease-related nonprofits, how to contact them and a brief description of the kinds of services and information each offers. Some provide services to all people who are ill and their families.
A small sample of resources from the appendices in the 2010 edition of AfterShock were reviewed and updated in June 2014. No further updates are anticipated.
CaringBridge is a nonprofit organization that allows you to create free and easy to use websites for keeping family and friends informed about a patient's illness. On a personalized CaringBridge page, patients, caregivers and their families can upload photos, diaries and other information that can be accessed only by those who have a special visitor ID and password.
The American Heart Association website contains information on a variety of heart diseases and an online treatment decision tool. At the 24-hour hotline, trained operators can answer your questions about any information contained on the website and mail pamphlets offered on almost topics covered by the website. The operators cannot give medical advice, refer you to doctors in your area or provide mental health support. (800) 242-8721 (24 hours, 7 days a week).
Association of Cancer Online Resources (ACOR) is a clearinghouse site of online communities (discussion lists, support groups, hosted websites) specifically for people coping with cancer. The extensive group of discussion lists for specific types of cancer, as well as more general issues such as survivorship, financial planning, and caregiving. The lists are free and unmoderated, but commercial activities such as pitching cancer drugs are forbidden.
American Self-Help Group Clearinghouse is an online sourcebook contains links to and contact information for over 100 self-help groups for a variety of diseases, from AIDS and heart disease to rare genetic disorders. The site also contains a list of toll-free numbers for self-help groups around the country.