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Wisconsin Governor declares official Rare Disease Day on February 28, 2017.

“Research brings hope to people living with rare diseases.”

Wisconsin Rare is a coalition of rare disease stakeholders formed to raise awareness for the rare and undiagnosed community.

Collaborate with us this February, April and throughout the year as we create positive change for all those impacted in Wisconsin by a rare and undiagnosed rare disease in one way or another. Together, we will increase awareness, strengthen research efforts, and make discoveries that will ultimately improve and even save lives.

There are over 7,000 distinct types of rare diseases – and nearly 1 in 10 in the US have one and are currently journeying the diagnostic odyssey in search for answers.

Which one are you connected to in some way? Maybe your mother? Father? Friend? Or maybe you have a relative who is ill and is in need of help, resources, and hope.

So come and collaborate with us this February and again in April as we begin to change the way we study and diagnose our loved ones living with rare diseases.


 There are more Americans who live with a rare disease than ALL of those who have either HIV, Heart Disease or Stroke.

 

In the United States, a disease is defined as “Rare” when it affects less than 200,000 at any given time.

rare disease advocacyNearly 30 million Americans are affected – and sadly, 30% of the children affected with a rare disease will not live to see their 5th birthday party.

A surprise to many, 95% of rare diseases are without an FDA approved treatment or therapy. Those 5% with FDA treatment still struggle with accessing it due to high costs and variability.

Families & private foundations provide about 3% of ALL medical research funding in the U.S.

2017 WISCONSIN RARE EVENTS 


Wednesday, January 25th, 2017:

Milwaukee Bucks vs. Philadelphia 76ers

7:00 PM – Bradley Center

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

The Bucks will provide RUN with 25 tickets, transportation 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.

Wednesday, February 8th, 2017:

Milwaukee Bucks vs. Miami Heat

7:00 PM – Bradley Center

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

The Bucks will provide RUN with 25 tickets, transportation 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, February 24th, 2017:

Milwaukee Bucks vs. Utah Jazz

7:00 PM – Bradley Center

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

The Bucks will provide RUN with 25 tickets, transportation 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.

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 starting lineup

Monday, February 27, 2017

Wisconsin’s 3rd Annual Event to Raise Awareness for Rare Disease Day 

9:30am – 10:30am: Rotunda Education / Networking Session

11:00am – 1:00pm: Annual Meeting

Address: Wisconsin State Capitol, 2 E Main St, Madison, WI 53703

Rare Disease Advocates Raise Important Awareness at the Wisconsin Capitol for Rare Disease Day® on February 27th, 2017. Join rare disease patients, caregivers and other health care advocates in Wisconsin to raise important awareness for rare diseases as part of Rare Disease Day®.


Tuesday, February 28, 2017

Rare Disease Day®


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, transportation 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 24th, 2017:

Milwaukee Bucks vs. Atlanta Hawks

7:00 PM – Bradley Center

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

The Bucks will provide RUN with 25 tickets, transportation 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.

Monday, April 10, 2017:

Milwaukee Bucks vs. Charlotte Hornets

7:00 PM – Bradley Center

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

The Bucks will provide RUN with 25 tickets, transportation 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.

Saturday, April 29, 2017

Undiagnosed Rare Disease Day