Wisconsin Rare Disease Alliance

09/04/2026

You may know it as the heel prick. Usually within the first 24–48 hours after birth, a few drops of blood are collected from a baby’s heel and placed on a special card. The sample is screened for certain serious conditions where early identification and treatment can make a meaningful difference.

09/03/2026

Newborn screening happens in every state, but state programs can vary. The conditions screened, timing, follow-up processes, and program requirements may differ. Families and advocates should know what is included where they live. Find your state program at newbornscreening.hrsa.gov/your-state.

09/01/2026

September is Newborn Screening Awareness Month. A few drops of blood, a quick hearing check, and a simple pulse oximetry screen can help identify serious health conditions before symptoms appear. Early screening can mean earlier answers, earlier treatment, and a healthier start. This month, we’ll share what newborn screening is, why it matters, and how families and advocates can learn more about the program in their own state.

08/14/2026

Along with school supplies, new schedules, and first-day plans, families living with rare disease may also be thinking about medications, emergency plans, accommodations, school nurses, and how much their child wants others to know about their condition.

A little preparation, and a lot of communication, can help make the transition back to school a little easier.

We put together a few reminders to help your family get ready for the year ahead. 💙

Save this post to come back to as you prepare, or share it with another rare disease family who might find it helpful.

From all of us at WI Rare, we're wishing Wisconsin's rare disease students and families a safe, welcoming, and successful school year!

07/28/2026

WI Rare is proud to represent Wisconsin at the National Conference of State Legislatures (NCSL) Legislative Summit in Chicago as a member of the State Zebra Network. The State Zebra Network is made up of 16 state rare disease coalitions that collaborate to share knowledge, resources, and best practices to advance rare disease policy efforts across the country. RareRising

07/25/2026

Today is Genetic Testing Action Day!

07/20/2026

The Wisconsin Rare Disease Alliance and GeneDx want to hear from you! We are inviting caregivers to consider a short online research survey. You are eligible if you have looked for diagnostic answers for your child. The purpose is to understand if the process of trying to find answers for your child affected your work or daily activities. What we learn may help to improve care pathways in the future.

This survey is completely voluntary. Your responses are anonymous, and no identifying information will be collected. Choosing not to participate will not affect your child’s care or relationship with GeneDx in any way.

To learn more, visit:

07/20/2026

This is so true.

05/18/2026

Super proud of Cade and the Wisconsin PWS community for their work on having May declared Prader-Willi Syndrome Awareness Month in Wisconsin!

05/18/2026