In 2013, NORD encouraged individuals to plan activities conducted at state capitols and state houses around the country to help raise awareness of rare diseases issues that are relevant at the state level. State House events occurred in California, Texas, Massachusetts, Connecticut and New Jersey. The purpose of the events was to raise awareness of rare disease issues among state legislators; patient organizations and companies work together to plan and organize these events.
This project is modeled after a very successful Massachusetts State House Rare Disease Day event organized by Blair Van Brunt of the Shwachman-Diamond Syndrome Foundation and Sarah MacDonald of the Massachusetts Biotechnology Council.
2013 State House Events
Here are some images from the 2013 State House 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 developed with the organizers of the Massachusetts State House event
- Major messages of Rare Disease Day
- 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
If you are interested in planning or participating in a 2014 State House event, please sign-up using this form: