Wisconsin Rare Disease Alliance

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Menomonee Falls, WI
Wisconsin Rare Disease Alliance

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A Coalition to Advance Rare Disease in Wisconsin

11/04/2026

Kudos to Wisconsin newborn screening leaders!

At the 2026 APHL Newborn Screening Symposium in New Orleans, the Association of Public Health Laboratories honored six leaders in the field, and two of them are from Wisconsin!

Dr. Mei W. Baker received the George Cunningham Visionary Award in Newborn Screening, which recognizes the greatest contribution to expanding or improving newborn screening by public health agencies. Dr. Baker is the Wynne Mateffy Professor of Pediatrics at the UW School of Medicine and Public Health and directs the Newborn Screening Laboratory at the Wisconsin State Laboratory of Hygiene.

Dr. Robert D. Steiner received the Clinician Champion Award, which honors clinicians who help make sure newborns get timely screening, follow-up, and care. Dr. Steiner is a clinical professor of pediatrics at the UW School of Medicine and Public Health and medical director of Newborn Screening at the Wisconsin Department of Health Services.

For families affected by rare diseases, newborn screening can mean an earlier diagnosis and faster access to treatment. We're grateful to have leaders like Dr. Baker and Dr. Steiner working on behalf of Wisconsin's newest residents. Congratulations to you both!

11/03/2026

Wisconsin, today is Election Day!

WI Rare Disease Alliance reminds you to make time to vote. Your voice matters!

- Polls are open from 7 a.m. to 8 p.m.
- Find your polling place and preview your ballot at MyVote.wi.gov.
- Bring an acceptable photo ID.

10/23/2026

It's Invisible Disabilities Week.

10/16/2026

Sharing for our community.

COMMUNITY CALL-OUT: HELP US STOCK OUR DIAPER SUPPLY!

Our Hygiene Pantry is asking for our community’s help! We are in need of diaper donations to help support local families and their little ones.

Our BIGGEST needs right now are:
✨ Diapers in size 7
✨ Overnight diapers
✨ Diapers in other sizes are always appreciated, too!

Diapers are an everyday necessity, but their cost can quickly add up for families. Your donation, whether it's one package or several, can help ease that burden and make a meaningful difference for a local family.

💛 How you can help:
🛍️ Pick up a package of diapers during your next shopping trip.
📣 Share this post to spread the word.
🤝 Encourage friends, family, or your workplace to join in!

Every package helps us provide essential items to families in our community with dignity, compassion, and care.

Thank you for always showing up for our neighbors! Together, we can make sure our littlest community members have what they need.

10/14/2026

How has navigating your child's diagnostic journey affected your ability to work or perform daily activities? Survey closes October 31st. https://forms.cloud.microsoft/pages/responsepage.aspx?id=Qtlr-cyNjk-HGbiQYGRpD_rP11tCyb9BvXuS4oWApJJUNTRIVllNMVY2WTI1RDgzOE9CUlNTNzE5Sy4u&fbclid=IwY2xjawU8f1JleHRuA2FlbQIxMQBwZG9mAXNydGMGYXBwX2lkEDIyMjAzOTE3ODgyMDA4OTIAAR7m3ZS0456UTa6HNS7KJXdOam-Rysnsqohhn0vrN577vYwDuqc3AlO5aWGLzQ_aem_-KUhji1RGYYXkO_FbbQz9Q&route=shorturl

10/12/2026

October is Gaucher Awareness Month. This year a major milestone worth celebrating is the recommendation to add Gaucher disease to the newborn screening panel! Learn more about Gaucher disease by visiting National Gaucher Foundation's website https://www.gaucherdisease.org/

10/02/2026

Our President, Kimberly Haugstad, shares her thoughts on our Beyond the Diagnosis: "Rare" Journey Across America exhibit as Newborn Screening Awareness Month ends. https://youtube.com/shorts/QMUL-IH3fek?feature=share

WI Rare President, Kimberly Haugstad, shares her final thoughts on ...

09/29/2026

It's not too late to let your voice to be heard. This survey will be closing soon.

09/29/2026

How amazing to see the picture come to life! Thank you for sharing your rare disease journey with the world.

09/29/2026

Thanks to Children’s in MKE for being one of the 20 national sites for accessing this rare disease therapy for Sanfilippo Type A! We’re grateful to see these advancements in science and partnerships in Wisconsin to bring new hope to our rare families! This is a breakthrough gene therapy to a disease who had no treatment before. While not a cure, the one dose therapy is shown to preserve neurologic function.

A breakthrough treatment for a rare childhood genetic disorder is giving new hope to families. The FDA recently approved the gene therapy that will be available in southeast Wisconsin.

Address

N85 W16110 Appleton Avenue
Menomonee Falls, WI
53051

Website

https://wirare.org/

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