HNC Legislative Day and NC Rare Disease Day

Make Your Voice Heard!

Tuesday, February 12, 2019 – 8:45am-3:00pm NC Legislature Building 16 West Jones Street Raleigh, NC 27601 This event is over.

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An important new year is upon us as Hemophilia of North Carolina (HNC) begins a partnership with the National Organization for Rare Disorders (NORD) to host the NC Rare Disease Day at the Legislature. For years this has been HNC’s Legislative Day for the bleeding disorders community. But now it's even bigger as we invite other nonprofits to join. HNC looks forward to working with NORD and rare disorder organizations from across the state to have a collective voice about issues that affect a much larger common community. It’s sure to be an HNC event you won’t want to miss!

The focus of this year's event will be on Medicare expansion and reform. As we focus on these special issues, we want to continue building awareness and relationships among our elected state representatives and our state's bleeding disorders community. You can do your part to aid this effort: join HNC and tell your story to members of the North Carolina Legislature!

HNC is an organization that serves all of North Carolina. We need members from all corners of the state join us in Raleigh and represent the bleeding disorders community to their district representatives.

There will be an optional dinner and training session on Monday, February 11th to help prepare you to speak with your representatives.

On Tuesday, February 12th, HNC members will have the opportunity to meet in groups with their legislators and staff.

There are some changes this year from prior years: HNC and other rare disorder organizations will have a booth at the Halifax Mall to help raise awareness among legislative staff and the general public. The Halifax Mall is located between the two legislature buildings. There is a lot of foot traffic which will provide an excellent opportunity to raise awareness. The morning will begin with a briefing at 8:45am at the HNC Booth at the Halifax Mall. After receiving your schedule and appointments for the day, participatints will walk over to the Legislature Buildings to meet with their legislators and staff.

Participants in this event are expected to abide by the Code of Conduct as established by HNC's Advocacy Committee and NORD.

Parking at the Hampton Inn & Suites

Parking at the hotel is $6*. The hotel is within .7 miles (a 15-minute walk) of the Legislative Building. You can choose to walk or find parking closer (see below).

Walking Directions from Hotel to the HNC booth at the Halifax Mall

Out of the hotel, turn left on W Johnson Street, then turn right on N West Street. Walk 2 blocks (0.2 miles) and turn left on W North Street. Turn right onto N Harrington Street (less than .1 miles) and then make the first left onto W Lane Street. Stay on W Lane Street for .3 miles then turn left onto N Salisbury Street. The Legislative Office Building will be on your right as you walk down Salisbury Street. Go around the Legislative Office Building and the HNC booth will be behind the building in the Halifax Mall area.

Parking for the Legislative Building

Parking is available weekdays in several public pay parking decks* within walking distance. The Green Square parking deck is at the corner of Edenton and McDowell Streets, behind the Nature Research Center (NRC). The entrance to the deck is on Edenton between Salisbury and McDowell Streets. Exit the deck on the north side and you will be at the back entrance to the NRC.

*Please see Charlene for parking reimbursement.

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