Rare Disease Week 2017

February 11, 2017 9:50 pm No Comments 1

RUN will be doing the following during Rare Disease Week!

Sunday, February 26, 2017:

Milwaukee Bucks vs. Phoenix Suns

2:30 PM – Bradley Center

Address: Bradley Center, 1001 N 4th St, Milwaukee, WI 53203

RUN families will enjoy a Buck’s suite as well as being allowed to stand with the Buck’s during starting lineup. RUN will premiere a sixty second video during one of the Buck’s timeouts! We are so excited to build the relationship with the Milwaukee Bucks and with our community here in Milwaukee.

Monday, February 27th, 2017:

National Organization for Rare Disorders (NORD)‘s sponsored State House Event at the Wisconsin State Capitol
 9:30am – 11:00am: “Informal meet and greet” with Education Session in Rotunda. Have conversations with a NORD representative, clinicians, researchers, and others affected by rare diseases. Truly a unique experience for all!

11:30am – 1:00pm: Annual event help in the Assembly Parlor West. Here we sit down with our WI Legislators and their staff to convey key issues affecting the rare disease population right here in WI.

For More Information on the State House Event

Tuesday, February 28th, 2017 – Thursday, March 2nd:

Rare Disease Week on Capitol Hill through Rare Disease Legislative Advocates:
Rare Disease Week on Capitol Hill brings rare disease community members from across the country together to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators.
Tuesday, February 28th: Legislative Conference 

Presented by Horizon Pharma
FHI 360
1825 Connecticut Ave NW, Washington, DC 20009

Wednesday, March 1st: Lobby Day Breakfast & Hill Meetings 

Wednesday, March 1st: Rare Artist Reception
Kennedy Caucus Room, Russell Senate Office Building

Thursday, March 2nd: Rare Disease Congressional Caucus Briefing 
Room G-50, Dirksen Senate Office Building

 

Wednesday, March 1st, 2017:

Milwaukee Bucks vs. Denver Nuggets

7:00 PM – Bradley Center

Address: Bradley Center, 1001 N 4th St, Milwaukee, WI 53203

The Bucks will provide RUN with 25 tickets, parking passes and food vouchers on behalf of Greg Monroe! RUN has donated the tickets to the Children’s Hospital of Wisconsin Foundation to help locate Milwaukee area rare and undiagnosed families.

Friday, March 3rd, 2017:

utah-jazz-2016
7:00 PM – Vivint Smart Phone Arena

Address: 301 S Temple, Salt Lake City, UT 84101

RUN’s NBA Initiative:  The NBA Utah Jazz will host 30 children on the court for their National Anthem through tickets donated by Boris Diaw and their player donation program. They will honor Utah Rare and the National Organization for Rare Disorders (NORD).