Rheumatoid Disease Advocacy

The following tips and resources have been compiled by volunteers who have taken the initiative to pursue patient advocacy efforts with their local or national governments. This information can be used as a reference and starting point for anyone who is interested in participating in patient advocacy with the help of RPF. Members can also discuss advocacy activities in the forum – click here. Please check back for more advocacy ideas in the future. RPF thanks Shannon, Janette, Jeanie and others for sharing how they have advocated successfully.

Please carefully read the information below and click here to reference EXAMPLE ADVOCACY LETTERS.

What is an advocate? The Merriam Webster Dictionary defines it this way:

1: One that pleads the cause of another; specifically: one that pleads the cause of another before a tribunal or judicial court
2: One that defends or maintains a cause or proposal
3: One that supports or promotes the interests of another

You may be thinking, “I’ve never sent a letter to my local representative” or, “I don’t even know where city hall is in my town,” but that doesn’t mean you can’t advocate for causes you are passionate about. Here are a few tips you can use for advocating for those of us with rheumatoid disease:

1) Be yourself. You don’t have to be a public relations specialist to raise awareness in your community. As a matter of fact, what news organizations really seek out much of the time is a real person who is dealing with the issue at hand.

2) What is your goal? Decide what type of advocacy it is you are looking to do – a proclamation for Rheumatoid Awareness Day, addressing a group in your community, organizing an event to promote awareness of this disease or just awareness in general.

3) Start small. If you have never done anything like this before, you may want to start small by addressing a small group of individuals, possibly some you already know – a local civic organization such as the Optimists or Lions Club, a church group, or co-workers.

4) Think outside the box. Based on what your goal is, brainstorm a list of people whose help you will need to carry it out. You may be surprised and find that you know several people with “connections”. Don’t be afraid to ask for their help.

5) Ask others. Ask your family and friends if any of them know anyone on your list. If not, don’t panic! You can do this without inside contacts.

6) Inside tips! Here are a couple hints about on those on the inside:

  • The Mayor’s secretary is the person in the know. That individual is responsible for scheduling, printing and preparing nearly everything the Mayor does.
  • The morning news programs are some of the best news outlets to get small awareness segments. Watch your local news in the early morning to see who the anchors are. Their email should be listed on the website of the station.
  • Don’t be afraid to email them with your story idea (based on what you decided above). Then follow up if you do not hear back!

7) Make it easy on them! Provide them with all the background information they will need to carry out your awareness task. This should include links to the RPF and RAWarrior websites so they can easily find background information, the wording for a proclamation so all they have to do is print it, and so on.

8) Don’t give up! If your first attempt is not successful, try another angle.

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MORE ADVOCACY TIPS

When advocating, speak from your perspective, your own personal story and experience; no one can argue your own story. When writing to US Congressmen understand that a  "constituent"  is who they are working for, and the "constituent" is who they will listen and respond to.

Don't fax anything, their staff will throw it out.

Contact information for your local representative can be found at the following link:  http://www.house.gov/representatives/

You can contact your US Congressman; their staff will ask you for your zip code, as they want to verify that you live in their district. Use your full name and address and tell them what you are calling about. Your representative will also have a local office if you wish to make an appointment to visit and speak to their staff face to face. If you want, you could drop off RPF information and get to know them personally. The staff is on average, a young political career-minded person that is there to listen to your needs. They will take notes and pass information on to your congressman.

Don't forget to follow up. If it takes time to get a response, don't get discouraged.

The first step could be to announce Rheumatoid Awareness Day;  having the press release is a good way to open the conversation with your representative, and explain why we need it and start the educating/awareness process.

To advocate you must first educate. Why would you want to contact your representatives in Washington, DC? There are many reasons. They appropriate funds for healthcare, they have the power to help us with research funding, they sit on committees we might need representation on and they need to know who we are and why we have come together.