You are here: Home Day to Day Living Advocacy Summary
Information about all aspects of finances affected by a serious health condition. Includes income sources such as work, investments, and private and government disability programs, and expenses such as medical bills, and how to deal with financial problems.
Information about all aspects of health care from choosing a doctor and treatment, staying safe in a hospital, to end of life care. Includes how to obtain, choose and maximize health insurance policies.
Answers to your practical questions such as how to travel safely despite your health condition, how to avoid getting infected by a pet, and what to say or not say to an insurance company.


"Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it is the only thing that ever has!"
--  Anthropologist Margaret Meade

On a personal level, advocacy can:

  • Help make you feel empowered.
  • Help turn hopelessness into hopefulness.
  • Help improve your quality of life.

On a more general level, advocacy is about changing existing laws, or enacting new ones, to deal with a subject you care about.

If you are interested in becoming an advocate, check existing organizations to see where there is a fit between your interests and the organization. If there is no such group, consider asking an existing group to take on your cause. If all else fails, consider starting your own group -- even if it is a one-time grass roots e mail campaign to let a congressperson know that many constituents care about your cause.

Advocacy organizations:

Cancer Advocacy Organizations

Please send contact information for additional advocacy groups to: Survivorship A to Z.

Lung Cancer Research: ALCASE: The Alliance for Lung Cancer Advocacy, Support and Education. Founded in 1995. ALCASE advocates for people with or at risk for lung cancer., working to increase federal funding for lung cancer research. offsite link Hotline: 800.298.2436

General Policy Issues: NCCS: National Coalition for Cancer Survivorship, founded in 1986, advocates for quality cancer care. NCCS is part of a nationwide grassroots advocacy network called Cancer Advocacy. The network is organized according to geographical location so messages can be targeted according to congressional district. offsite link Tel.: 877.622.7931

Patient Advocate Foundation, founded in 1996. Among other activities, Patient Advocate Foundation sponsors Patient Congress to educate and empower people. offsite link Tel. 800.532.5274

General Information: The Commonwealth Fund, a private foundation that aims to promote a high performing health care system. Supports independent research on health care issues. offsite link Dr Mike Magee strives to help his viewers understand the big picture of how our health care system works and how it affects their lives ''" offering, along the way, practical advice on what we need to do to make the system work more effectively for all of us.

HIV Advocacy Groups

General Policy Issues: National Association of People With AIDS. Founded in 1983 advocates to end the pandemic of, and suffering caused by, HIV/AIDS. offsite link Tel.: 240.247.0880

Program to teach skills needed to change the policies of governments and private institutions: Gay Men's Health Crisis (GMHC). A six week program. See offsite link Tel.: 800.243.7692

Other Advocacy Organizations

To find an advocacy Organization:  Search the web by typing the subject in which you're interested into your favorite search engine, or the major lines like offsite link, offsite link, offsite link.

The Encyclopedia of Associations lists more than 135,000 nonprofit membership organizations by subject. Information is available by subscription or through your local library, college or university. Published by Thomson Gale. You may be able to access the Encyclopedia online on a trial basis at offsite link.

Manages grassroots advocates' network of consumers' perspective in health policy debates: Families USA manages a grassroots advocates' network of organizations and individuals working for the consumer perspective in national and state health policy debates. Membership in the Health Action Network is free.  Families USA also produces health policy reports. offsite link  tel. 202-628-3030.

How To Start Your Own Advocacy Group

There are professional groups to help guide setting up a group. For example, Families USA, offsite link. For a fee, public relations firms can help create a comprehensive, multi-dimensional advocacy strategy.

There are also classes which teach people advocacy skills, including how to share your story with legislators and the media. For classes in your state, contact the National Association of Area Agencies on Aging. Ask for the CEO's office. Tel. 202.872.0888.

If you decide to start a group on your own, a few tips to keep in mind are:

  • Measure your commitment to the project.
    • Some ideas will fall right into place, while others will require some hard work and disappointment.
    • Make sure your commitment will be able to withstand some setbacks.
  • Learn about starting a nonprofit.
  • Make the purpose of the group clear and explicit from the beginning
  • Take advantage of all the free publicity you can get
    • Mail, fax or e-mail announcements to your local newspapers and television stations. Perhaps the group has a website with a section for community events. For contact information for your local sources, see offsite link
    • If there is a local reporter who writes stories on health issues, educate the reporter about the issues of concern to you. The reporter may do a story about the issues and how your group is helping.
  • Search for volunteers.
  • Check with other people with your condition, friends and relatives.
  • Brainstorm with your volunteers on the specifics of the group and how to go about achieving your goals.
  • Delegate responsibilities for each person.
  • Let people know about your successes.
  • Setbacks are discouraging.
  • Whether a setback becomes a knock out punch is up to you.
  • Even by talking about the issue you make a difference.

Before you speak with the press, read: Media: How To Tell Your Story To The Press.