Celiac disease advocates, like all disease advocates, push forward legislative policy change and drive federal funding for research and education. Advocates educate their elected officials about their disease and hold them accountable to accelerate new treatments and a potential cure.
You do not need to be an expert in government and policy to be an advocate. All you need is your voice, your passion, and a commitment to making a difference.
Here are some tips on how to be an advocate for yourself or your entire community:
Advocate for yourself
Part of being an advocate is speaking up for yourself in your everyday life, especially when it comes to your health. Become an active part of your healthcare team by researching your disease, writing down a list of questions to ask your doctor, and effectively communicating your healthcare needs. Patient advocacy websites like celiac.org provide you with information and checklists about the care you should be receiving for your disease.
Be prepared
While anyone can participate in advocacy, it is important to be prepared for your meetings with elected officials by gaining an understanding of the issue you are supporting, knowledge of how the meeting should work, and resources you can use to support your advocacy efforts. The Celiac Disease Foundation iAdvocate Training Program provides participants with comprehensive advocacy training, and can be used as a model training program for all disease advocacy.
Create a lasting relationship
Part of being a successful advocate is creating a lasting relationship with your elected officials and their staffs. Becoming a trusted resource for them makes them more likely to support your efforts and amplifies your impact. Meeting or speaking with a staff member can be just as effective, as staff members are the people elected officials turn to for guidance. Find contact information for your senators and your representative.
Involve your network
Advocacy doesn’t need to be done alone — involve your friends, family, and community in your efforts for your disease advocacy. If your contacts send an email, post about your disease, or place a call to their elected official, your advocacy efforts will make an even greater impact. Your voice is important and has an even bigger impact when multiplied by your community.
Use the tools you have
One of your most powerful advocacy tools at your disposal is something you might already use every day. Social media is the most effective way to spread awareness about your disease to more people, while being cost-efficient and quick. Tagging your elected officials in an educational post about your disease or tweeting at them could be an easy and positive way to get their attention and raise awareness. The Celiac Disease Foundation offers a Social Media Toolkit with sample posts to get you started.
For more information, visit iadvocate.celiac.org.