The main purpose of hosting advocacy events is to raise awareness at the state level for rare diseases. It has become increasingly evident in recent years that advocacy at the national level isn’t enough. Many issues of importance to the rare disease community are debated and decided at the state level. Educating state legislators and their staff members is extremely important!
Host an Advocacy Event
Coordinate a public meeting in your city/town
- Invite your representatives to attend and speak in support of rare disease patients and their families.
- Promote the event in your area to encourage public attendance to learn more about rare diseases and the challenges patients and their families face.
Make an appointment to speak with your State Representatives
Set up an information table in your state capitol’s lobby or cafeteria
- Download, print and distribute fact sheets on rare diseases
- Prepare an elevator pitch for speaking with passerby’s
- Collect business cards to follow up and schedule one on one meetings to continue the conversation
- Contact your state capitol building administrative team to learn how to arrange a tabling