Established Advocacy Groups
There are scores of groups devoted to sharing information about schizophrenia and advocating for better treatment. It might be a good idea to start with the largest and work your way down to the smaller groups. You will pick up information first from established, reliable sources. As you learn more, you will be better able to judge the quality of advice and information offered by newer and smaller groups and organizations.
When you visit websites of self-help groups or other organizations, look for a list of references or sources that you can use to verify the information or stories. Check the sponsor of the site or book. Is it a reputable institution, organization, or publisher? Do the people offering the information have experience with the disease? Do they have professional credentials?
The National Alliance on Mental Illness (www.nami.org) describes itself as “the nation's largest grassroots organization for people with mental illness and their families.” It has local affiliate chapters all over the United States that can provide you with an established stage for getting involved and finding people to share experiences, support, and information.
The Treatment Advocacy Center
The Treatment Advocacy Center (www.treatmentadvocacycenter.org) was founded by noted schizophrenia expert E. Fuller Torrey, MD. This nonprofit organization's goal is to ensure proper treatment of mental illness as efficiently and quickly as possible. It provides useful general, medical, and legal resources. You can find information on research topics, news stories, legal actions, relevant political stories, and personal accounts on the group's website.
Schizophrenia.com (www.schizophrenia.com), founded in 1995, is a volunteer-run group composed mostly of people who have cared for loved ones who have been diagnosed with schizophrenia. Although most of these people do not have medical or mental health backgrounds, their strength lies in their personal experiences with schizophrenia and the significant amount of research they have done. The site relies on the advice of qualified experts and offers a place for caregivers, families, and patients with firsthand knowledge of the disease to share information and experience.