NORD is encouraging individuals to plan activities at their state capitol or state house to help raise awareness of rare diseases issues that are relevant at the state level. The purpose of the events are to raise awareness of rare disease issues among state legislators; patient organizations, medical professionals and companies work together to plan and organize these events.
Tools and Resources to Help
To empower advocates across the country to organize these events in their states, NORD will provide the following:
- A comprehensive toolkit for the state level organizers
- A sample agenda and tips for working with state legislators
- A sample press release and major messaging for the event including fliers, handouts and signage
- Information packets relevant in all states about the most pressing state level rare disease issues
- Assistance in connecting with others in your state who might be interested in partnering with you on this project
- Promotion of your event
Planning is Underway in the Following States:
If you would like to get involved in an event in any of the following states please email us at firstname.lastname@example.org.
- New Jersey
- New York
- North Dakota
If your state is not listed and you are interested in planning something in your State House for 2014, please sign-up using the following form: