Days To Go

0

0

0

Advocacy Events

What do you want your representatives to know? Rare diseases affect 1 in 10 people. That equals considerable voting power. Advocacy Events are organized by NORD’s Rare Action Network™, the nation’s largest advocacy network working to improve the lives of people impacted by rare diseases. The events provide the opportunity for advocates to meet face-to-face with their elected officials and advocate for legislation that directly affects the rare disease community. Listed below, you can find out if an event is being hosted in your state or if a volunteer is needed to lead the charge. This page is updated regularly, so make sure to check back often for the most current information on 2018 Advocacy Events!

RAN_logo_RGB

Benefits of Hosting Advocacy Events

To empower advocates at these events, NORD provides volunteers with:

  • Comprehensive toolkit
  • Sample agenda and tips for working with state legislators
  • Sample press release and major messaging for the event including fliers, handouts, and signage
  • Information packets 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 on website and social media

2018 Advocacy Events

Below is an up-to-date list indicating the status of Advocacy Events in each state. Find out below if registration for an event is open, if planning has begun, or if a volunteer is needed to help host the event.

NORD’s Rare Action Network™ volunteers are planning an Advocacy Event in Alabama. To register for this event, please click here.

NORD’s Rare Action Network™ State Ambassador for Alaska, Holly Ward, is planning an Advocacy Event in Alaska. For more information about this event, please contact Holly at holly.ward@rareaction.org

NORD’s Rare Action Network™ State Ambassador for Arizona, Melinda Burnworth, is planning an Advocacy Event in Arizona. To register for this event, please click here.

NORD’s Rare Action Network™ State Ambassador for Arkansas, Andrea Taylor, is planning an Advocacy Event in Arkansas. To register for this event, please click here.

NORD’s Rare Action Network™ State Ambassador for California, Vanessa Puopolo, is planning an Advocacy Event in California. To register for this event, please click here.

NORD’s Rare Action Network™ State Ambassador for Colorado, Katie Randall, is planning an Advocacy Event in Colorado. To register for this event, please click here.

NORD’s Rare Action Network™ State Ambassador for Connecticut, Lesley Bennett, is planning an Advocacy Event in Connecticut. To register for this event, please click here.

There is not currently an event being planned by a Rare Action Network™ State Ambassador. To express interest in planning an event, please fill out the form below.

NORD’s Rare Action Network™ State Ambassador for Florida, Fran Hokkanen, is planning an Advocacy Event in Florida. For more information about this event, please contact Fran at fran.hokkanen@rareaction.org.

NORD’s Rare Action Network™ State Ambassador for Georgia, Beth Nguyen, is planning an Advocacy Event in Georgia.
To register for this event, please click here.

NORD’s Rare Action Network™ volunteers are planning an Advocacy Event in Hawaii. To register for this event, please click here.

There is not currently an event being planned by a Rare Action Network™ State Ambassador. To express interest in planning an event, please fill out the form below.

NORD’s Rare Action Network™ volunteers are planning an Advocacy Event in Illinois.
To register for this event, please click here.

There is not currently an event being planned by a Rare Action Network™ State Ambassador. To express interest in planning an event, please fill out the form below.

NORD’s Rare Action Network™ State Ambassador for Iowa, Sharon Ponce, is planning an Advocacy Event in Iowa. For more information about this event, please contact Sharon at sharon.ponce@rareaction.org.

NORD’s Rare Action Network™ State Ambassador for Kansas, Eden Lord, is planning an Advocacy Event in Kansas. For more information about this event, please contact Eden at eden.lord@rareaction.org.

NORD’s Rare Action Network™ State Ambassador, Patrick Dunegan, is planning an Advocacy Event in Kentucky. To register for this event, please click here.

There is not currently an event being planned by a Rare Action Network™ State Ambassador. To express interest in planning an event, please fill out the form below.

NORD’s Rare Action Network™ volunteers are planning an Advocacy Event in Maine. To register for this event, please click here.

NORD’s Rare Action Network™ State Ambassador for Maryland, Lydia Seiders, is planning an Advocacy Event in Maryland. For more information about this event, please contact Lydia at lydia.seiders@rareaction.org.

NORD’s Rare Action Network™ State Ambassador for Massachusetts, Jen Melanson, is planning an Advocacy Event in Massachusetts. To register for this event, please click here.

NORD’s Rare Action Network™ State Ambassador for Michigan, Jen O’Connor, is planning an Advocacy Event in Michigan. To register for this event, please click here.

NORD’s Rare Action Network™ State Ambassador for Minnesota, Erica Barnes, is planning an Advocacy Event in Minnesota. To register for this event, please click here.

NORD’s Rare Action Network™ State Ambassador for Mississippi, Nancy Depreo, is planning an Advocacy Event in Mississippi. To register for this event, please click here.

NORD’s Rare Action Network™ State Ambassador for Missouri, Julie Atkin, is planning an Advocacy Event in Missouri. For more information about this event, please contact Julia at julie.atkin@rareaction.org.

There is not currently an event being planned by a Rare Action Network™ State Ambassador. To express interest in planning an event, please fill out the form below.

There is not currently an event being planned by a Rare Action Network™ State Ambassador. To express interest in planning an event, please fill out the form below.

There is not currently an event being planned by a Rare Action Network™ State Ambassador. To express interest in planning an event, please fill out the form below.

NORD’s Rare Action Network™ State Ambassador for New Hampshire, Kimberly Pang, is planning an Advocacy Event in New Hampshire. To register for this event, please click here.

NORD’s Rare Action Network™  State Ambassador, Julie Raskin, is planning an Advocacy Event in New Jersey. To register for this event, please click here.

There is not currently an event being planned by a Rare Action Network™ State Ambassador. To express interest in planning an event, please fill out the form below.

NORD’s Rare Action Network™ State Ambassador for New York, Stacy Kasprzyk, is planning an Advocacy Event in New York. To register for this event, please click here.

There is not currently an event being planned by a Rare Action Network™ State Ambassador. To express interest in planning an event, please fill out the form below.

There is not currently an event being planned by a Rare Action Network™ State Ambassador. To express interest in planning an event, please fill out the form below.

NORD’s Rare Action Network™ State Ambassador for Ohio, Charlene York, is planning an Advocacy Event in Ohio. To register for this event, please click here.

NORD’s Rare Action Network™ volunteers are planning an Advocacy Event in Oklahoma. To register for this event, please click here.

NORD’s Rare Action Network™ State Ambassador for Oregon, Jennifer Knapp, is planning an Advocacy Event in Oregon. For more information about this event, please contact Jennifer at jennifer.knapp@rareaction.org.

NORD’s Rare Action Network™ State Ambassador for Pennsylvania, Kristen Smedley, is planning an Advocacy Event in Pennsylvania. For more information about this event, please contact Kristin at kristin.smedley@rareaction.org

There is not currently an event being planned by a Rare Action Network™ State Ambassador. To express interest in planning an event, please fill out the form below.

NORD’s Rare Action Network™ State Ambassador for South Carolina, Kerri Nelson, is planning an Advocacy Event in South Carolina. To register for this event, please click here.

There is not currently an event being planned by a Rare Action Network™ State Ambassador. To express interest in planning an event, please fill out the form below.

NORD’s Rare Action Network™ State Ambassador for Tennessee, Terry Jo Bichell, is planning an Advocacy Event in Tennessee. For more information about this event, please contact Terry Jo at terryjo.bichell@rareaction.org.

NORD’s Rare Action Network™ State Ambassador for Texas, Deborah Skolaski, is planning an Advocacy Event in Texas. To register for this event, please click here.

NORD’s Rare Action Network™ State Ambassador for Utah, Jennifer Summers, is planning an Advocacy Event in Utah. To register for this event, please click here.

There is not currently an event being planned by a Rare Action Network™ State Ambassador. To express interest in planning an event, please fill out the form below.

NORD’s Rare Action Network™ State Ambassador for Virginia, Jana Monaco, is planning an Advocacy Event in Virginia. For more information about this event, please contact Jana at jana.monaco@rareaction.org.

NORD’s Rare Action Network™ State Ambassador for Washington, Sandra Sermone, is planning an Advocacy Event in Washington. To register for this event, please click here.

There is not currently an event being planned by a Rare Action Network™ State Ambassador. To express interest in planning an event, please fill out the form below.

There is not currently an event being planned by a Rare Action Network™ State Ambassador. To express interest in planning an event, please fill out the form below.

NORD’s Rare Action Network™ State Ambassador for Wyoming, Nicole McAteer, is planning an Advocacy Event in Wyoming. For more information about this event, please contact Nicole at nicole.mcateer@rareaction.org.

2018 Interest Form

Use the form below to express your interest in attending a 2018 Advocacy Event in your state for Rare Disease Day.