APPENDIX H: Disease-Specific Nonprofit Organizations

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.

Sample Resources:

CaringBridge is a nonprofit organization offers free and easy to use Web sites for keeping family and friends informed about a patient's illness. The CaringBridge authors help patients and their families upload photos, diaries and other information updates to a personal site that can be accessed only by those who have a special visitor ID and password.

The American Heart Association Web site 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 Web site and mail pamphlets offered on almost topics covered by the Web site. 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, toll-free)

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.

This information was last updated June 2010 and will be updated every six months. A more complete list of information and resources are available in the book Aftershock and on the Prepared Patient Forum.