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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!

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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.

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 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. For more information about this event, please contact Melinda at melinda.burnworth@rareaction.org.

NORD’s Rare Action Network™ State Ambassador for Arkansas, Andrea Taylor, is planning an Advocacy Event in Arkansas. For more information about this event, please contact Andrea at andrea.taylor@rareaction.org

NORD’s Rare Action Network™ State Ambassador for California, Vanessa Puopolo, is planning an Advocacy Event in California. For more information about this event, please contact Vanessa at vanessa.puopolo@rareaction.org.

NORD’s Rare Action Network™ State Ambassador for Colorado, Katie Randall, is planning an Advocacy Event in Colorado. For more information about this event, please contact Katie at katie.randall@rareaction.org.

NORD’s Rare Action Network™ State Ambassador for Connecticut, Lesley Bennett, is planning an Advocacy Event in Connecticut. For more information about this event, please contact Lesley at lesley.bennett@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 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. For more information about this event, please contact Beth at beth.nguyen@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.

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 for Kentucky, Patrick Dunegan, is planning an Advocacy Event in Kentucky. For more information about this event, please contact Patrick at patrick.dunegan@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.

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. For more information about this event, please contact Jen at jen.melanson@rareaction.org.

NORD’s Rare Action Network™ State Ambassador for Michigan, Jen O’Connor, is planning an Advocacy Event in Michigan. For more information about this event, please contact Jen at jen.oconnor@rareaction.org.

NORD’s Rare Action Network™ State Ambassador for Minnesota, Erica Barnes, is planning an Advocacy Event in Minnesota. For more information about this event, please contact Erica at erica.barnes@rareaction.org.

NORD’s Rare Action Network™ State Ambassador for Mississippi, Nancy Depreo, is planning an Advocacy Event in Mississippi. For more information about this event, please contact Nancy at nancy.depreo@rareaction.org.

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. For more information about this event, please contact Kimberly at kimberly.pang@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.

NORD’s Rare Action Network™ State Ambassador for New York, Stacy Kasprzyk, is planning an Advocacy Event in New York. For more information about this event, please contact Stacy at stacy.kasprzyk@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.

NORD’s Rare Action Network™ State Ambassador for Ohio, Charlene York, is planning an Advocacy Event in Ohio. For more information about this event, please contact Charlene at charlene.york@rareaction.org.

NORD’s Rare Action Network™ State Ambassador for Oklahoma, Rachel Petties, is planning an Advocacy Event in Oklahoma. For more information about this event, please contact Rachel at rachel.petties@rareaction.org.

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 Kristen at kristen.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. For more information about this event, please contact Kerri at kerri.nelson@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 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. For more information about this event, please contact Deborah at deborah.skolaski@rareaction.org.

NORD’s Rare Action Network™ State Ambassador for Utah, Jennifer Summers, is planning an Advocacy Event in Utah. For more information about this event, please contact Jennifer at jennifer.summers@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 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. For more information about this event, please contact Sanda at sandra.sermone@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.

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.