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Legislative Events

Rare diseases affect 1 in 10 people.  That equals considerable voting power. Advocacy events, previously known as “State House Events”, are opportunities to meet face-to-face with your elected officials and advocate for legislation that directly affects the rare disease community.

View the schedule below for 2017 and use the form below to express your interest in getting involved.  If there is no event taking place in your state, we can help you plan one.

PA Statehouse event

Tools and Resources to Help

The Rare Action Network is the nation’s leading advocacy network working to improve the lives of the 30 million Americans impacted by rare disease. While working on both the national and state level, RAN filters information to help address issues of national concern and engage RAN advocates to take action through policy, awareness and education initiatives in their state and local communities.

What is RAN

The following resources are available to assist you with understanding how to prepare to meet with your legislator and what you should expect during these meetings. The following resources were prepared by the Rare Action Network (RAN), the nation’s leading advocacy network. Learn more about RAN here.

REGISTER: 2017 Advocacy Webinar

Advocacy 101 Presentation (NORD)

How to Prepare to Meet With a Legislator

What to Expect When You Meet Your Legislator

During your Advocacy Event, you will likely be speaking to a large audience and sharing your personal story. The following resources are available to you so you can learn to write an effective speech and powerful story while understanding how to deliver it to make an impact.  The following resources were prepared by the Rare Action Network (RAN), the nation’s leading advocacy network. Learn more about RAN here.

How to Write an Effective Speech

How to Create an Elevator Pitch

How to Write a Patient Story

2017 Advocacy Events

Information about scheduled Advocacy Events will be listed below for all 50 states. If you’re interested in organizing a Rare Disease Day event in your state for 2017 please let us know by submitting the interest form that is located at the bottom of this webpage.

Registration for the Rare Disease Day Advocacy Event in Alabama is now available. Register Here.

There is not currently an event being planned in your state. Please fill out the form above to express your interest in planning an event.

There is not currently an event being planned in your state. Please fill out the form above to express your interest in planning an event.

Registration for the Rare Disease Day Advocacy Event in Arkansas is now available. Register Here.

Registration for the Rare Disease Day Advocacy Event in California is now available. Register Here.

Registration for the Rare Disease Day Advocacy Event in Colorado is now available. Register Here.

Registration for the Rare Disease Day Advocacy Event in Connecticut is now available. Register Here.

An advocacy event is being planned in your state. Registration for this event will be made available soon.

There is not currently an event being planned in your state. Please fill out the form above to express your interest in planning an event.

Registration for the Rare Disease Day Advocacy Event in Georgia is now available. Register Here.

Registration for the Rare Disease Day Advocacy Event in Hawaii is now available. Register Here.

There is not currently an event being planned in your state. Please fill out the form above to express your interest in planning an event.

An advocacy event is being planned in your state. Registration for this event will be made available soon.

There is not currently an event being planned in your state. Please fill out the form above to express your interest in planning an event.

There is not currently an event being planned in your state. Please fill out the form above to express your interest in planning an event.

Registration for the Rare Disease Day Advocacy Event in Connecticut is now available. Register Here.

Registration for the Rare Disease Day Advocacy Event in Kentucky is now available. Register Here.

There is not currently an event being planned in your state. Please fill out the form above to express your interest in planning an event.

There is not currently an event being planned in your state. Please fill out the form above to express your interest in planning an event.

Registration for the Rare Disease Day Advocacy Event in Maryland is now available. Register Here.

Registration for the Rare Disease Day Advocacy Event in Massachusetts is now available. Register Here.

Registration for the Rare Disease Day Advocacy Event in Michigan is now available. Register Here.

Registration for the Rare Disease Day Advocacy Event in Minnesota is now available. Register Here.

Registration for the Rare Disease Day Advocacy Event in Mississippi is now available. Register Here.

Registration for the Rare Disease Day Advocacy Event in Missouri is now available. Register Here.

There is not currently an event being planned in your state. Please fill out the form above to express your interest in planning an event.

There is not currently an event being planned in your state. Please fill out the form above to express your interest in planning an event.

Registration for the Rare Disease Day Advocacy Event in Nevada is now available. Register Here.

Registration for the Rare Disease Day Advocacy Event in New Hampshire is now available. Register Here.

Registration for the Rare Disease Day Advocacy Event in New Jersey is now available. Register Here.

There is not currently an event being planned in your state. Please fill out the form above to express your interest in planning an event.

An advocacy event is being planned in your state. Registration for this event will be made available soon.

There is not currently an event being planned in your state. Please fill out the form above to express your interest in planning an event.

There is not currently an event being planned in your state. Please fill out the form above to express your interest in planning an event.

Registration for the Rare Disease Day Advocacy Event in Ohio is now available. Register Here.

Registration for the Rare Disease Day Advocacy Event in Oklahoma is now available. Register Here.

Registration for the Rare Disease Day Advocacy Event in Oregon is now available. Register Here.

Registration for the Rare Disease Day Advocacy Event in Pennsylvania is now available. Register Here.

There is not currently an event being planned in your state. Please fill out the form above to express your interest in planning an event.

There is not currently an event being planned in your state. Please fill out the form above to express your interest in planning an event.

There is not currently an event being planned in your state. Please fill out the form above to express your interest in planning an event.

An advocacy event is being planned in your state. Registration for this event will be made available soon.

An advocacy event is being planned in your state. Registration for this event will be made available soon.

Registration for the Rare Disease Day Advocacy Event in Utah is now available. Register Here.

There is not currently an event being planned in your state. Please fill out the form above to express your interest in planning an event.

An advocacy event is being planned in your state. Registration for this event will be made available soon.

There is not currently an event being planned in your state. Please fill out the form above to express your interest in planning an event.

There is not currently an event being planned in your state. Please fill out the form above to express your interest in planning an event.

Registration for the Rare Disease Day Advocacy Event in Wisconsin is now available. Register Here.

There is not currently an event being planned in your state. Please fill out the form above to express your interest in planning an event.