Hello Wisconsinites!

We connect with a reminder today! If you do not keep your zebra clothes ready at all times, it is time to pull them out again!  February 29^th is Rare Disease Day! This day recognizes the 300 million people worldwide living with a rare disease, their families and caregivers.

We are pleased to share that the Wisconsin Rare Disease Day Resolution 102/111 passed the Senate/Assembly.  JOIN WI Rare in recognizing this the roughly 600,000 people and their families living with rare in our beautiful state!

Some of the events we know of and/or have helped to organize are noted below. Hope you join in if interested and don’t forget your zebra stripes!   

Best,

Kimberly Haugstad
President/Founder
 

Madison

Medical College exhibit table at the Health Sciences Learning Center Atrium. February 29th  from 10:00 - 2:00pm, 750 Highland Ave. Madison, WI. Wear black and white for rare!

Look for the buttons and signs for Rare Disease Awareness February 29^th across the UW Madison Campus and State Street in Madison.

Milwaukee

Lighting up at the Hoan Bridge for Rare Disease. February 29th in the evening 

Component Brewing Company Zebra Hop Release Party. February 29th from 4-10pm, 2018 S 1st St #169, Milwaukee, WI.
*This signature brew was created by rare dad! 

Pending

Various possible interviews in the press. We will share on socials as they happen! 

What are YOU doing to recognize Rare Disease Day? Let us know and/or send us a picture, we'll share on socials as a Wisconsin community!

Advocacy is Still Needed

Legislation is still in process and your voice can help!  The Newborn Screening Senate Bill 962 has passed by the Assembly Bill 1057 needs to reach the floor. To proceed, the Assembly Health, Aging and Long-Term Care Committee needs to include this bill at a hearing in the next few weeks. 

What you can do to help:  Reach your own Assembly person. Request that they ask the Assembly Health, Aging and Long-Term Care Committee Chair (Clint Moses) to have a public hearing on this Assembly Bill #1057! 

There are about 6,000 babies born in Wisconsin each year. This bill adds federal newborn screening recommendations to the state-required newborn screenings, granting rule-making authority, and providing an exemption from emergency rule procedures. You can visit our national partner, the EveryLife Foundation to learn more about newborn screening across the country. 

Update on Copay Accumulator Bills

These bills include language that helps patients with rare diseases afford and adhere to their medications. They require health insurance policies to apply amounts paid by or on behalf of an individual covered under the policy for brand name prescription drugs to any cost-sharing requirement or to any calculation of an out-of-pocket maximum amount of the policy or plan.

While these bills may not progress this session, the campaign to be heard and make change has not stopped. Are you able to use a drug coupon or other support to help pay for your out-of-pocket insurance costs? Working with the Wisconsin All Copay Counts Coalition, we will keep the momentum building on this important topic for rare disease families and need to hear from you! Contact us to discuss Op-ed and other press opportunities. Stay turned on this topic.

Visit our socials for more information on Wisconsin Rare Disease Alliance!