Opportunities for Action!
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Time for Action!
Wisconsin families,
Several bills are circulating that impact Rare Disease families. We want to share how you can get involved.
AB 773 - Pharmacy Benefit Manager Bill That Addresses Copay Assistance
This bill removes barriers to prescription drug access. It requires all patient payments, including copay assistance programs, to be counted toward our out-of-pocket maximum and deductible. This is a topic that impacts us in rare disease.
A hearing will take place on Wednesday (2/14/24). If unable to attend, there ARE still steps you can take to weigh in on this legislation.
The American Cancer Society created a form to easily contact the Assembly Health Committee. Sign on to show your support for AB 773.
Contact your Representative and ask for them to encourage the Assembly Health Committee to hear this bill!
AB 1057 - Newborn Screening Bill
This bill calls for Wisconsin to add all national recommended conditions to its existing newborn screening panel. Early diagnosis saves lives, costs, and time on hospitalizations, unnecessary tests and misdiagnosis. Wisconsin currently lags behind all of our Midwest states. They all screen for more diseases than we do. We need a committee hearing in the coming weeks to keep this moving forward.
Rare Disease Storytime
The Village of Cottage Grove Library is hosting a Rare Disease Storytime on February 20th at 6pm at Taylor Prairie Library.
Wisconsin Rare Disease Alliance is proud to be one of the supporters for this event. Bring your child and join us as we learn more about rare disease!
Our Spring Interns
Introducing our Spring Advocacy Interns: Kaitlyn Jigalin and Sarah Phelan. We are excited for the advocacy efforts this team will deliver for Wisconsin rare disease awareness. You can learn more about our interns by visiting our website.
Remember Rare Disease Day!
Don't forget February 29th is Rare Disease Day! Events in Madison and Milwaukee are already planned, let us know if you have any rare disease activities you would like promoted. More coming soon.
Visit our socials for more information on Wisconsin Rare Disease Alliance!
