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State House Events

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

2014 Events:

In 2014 engagement happened in twelve states:

2015 Events:

If you are interested in planning or participating in an event in 2015, please sign-up using the following form:

State House Interest 2015

Items with an an asterisk (*) are required.