Advocacy Action—Starting a Patient Advocacy Organization
Use your voice to bring about change
Bladder cancer is the sixth most commonly diagnosed cancer in the U.S. and the fourth most commonly diagnosed cancer among men. Yet despite its prevalence, there has been no public awareness campaign dedicated to educating people about the risks or symptoms of bladder cancer. In addition, there has been relatively little government or private funding for research into a cure.
My husband was diagnosed with bladder cancer in 2000, and in May 2005, we decided it was time to give a voice to the fight against bladder cancer and to the hundreds of thousands of survivors of this disease. We founded the Bladder Cancer Advocacy Network—BCAN, pronounced “beacon”—and just celebrated our first anniversary.
If you’re dedicated to raising awareness about a disease, a patient advocacy organization is the most effective means of changing the status quo. Launching a new patient advocacy organization, however, can seem like a daunting task. But with commitment and focus, you can achieve a great deal in a short time. Here are some points that we found useful in our first year.
1. Determine the need. If there is an existing organization devoted to your cause, it’s not necessary to re-create the wheel—consider combining your resources to make an even stronger voice. Decide on a mission that is realistic and reachable.
2. Enlist the support of others. No one person can take on the challenge alone. Talk with doctors, nurses and other survivors to help assess the needs and priorities of your group. Solicit specialists to join a scientific advisory board; it helps give a new organization instant credibility.
3. Focus on priorities. A new organization can go in a hundred different ways, so you need to determine what’s most important to you at the beginning. For BCAN, it was coming up with a name (one that had a good acronym and an available web address), creating a logo with our “look,” and getting our application for nonprofit status granted as soon as possible.
4. Launch your website quickly. The most effective way to get the word out about your organization and its mission is to get on the web. Consider low-cost ways to launch—we found a competent and reasonably priced web developer through www.elance.com. Keep your website simple and easy to use, and don’t try to be everything to everyone at the beginning.
5. Network to get your name out. Meet with members of other cancer advocacy organizations who can provide you with guidance and the benefit of their experiences. Meet with representatives of relevant government agencies to advise them of your mission.
6. Consider fundraising options. This is an ongoing challenge. To get started, think about registering your group with Network for Good (www.networkforgood.org) to enable online donations from friends, family members and the survivor community. Look for corporate partners and foundations that may work with you to increase funding. It is also important to develop a fundraising vehicle such as a gala, walk or run.
—Diane Zipursky Quale
Diane Zipursky Quale is the president and co-founder of the Bladder Cancer Advocacy Network.
For More Information about the Bladder Cancer Advocacy Network: