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Wisconsin Rare Disease Alliance (@WiRareAlliance) profile picture

Wisconsin Rare Disease Alliance

@WiRareAlliance

A Coalition to Advance Rare Disease in Wisconsin

 Wisconsin, USA
Joined May 2023
  • Tweets180
  • Following158
  • Followers25
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Photo by Wisconsin Rare Disease Alliance (@WiRareAlliance)Photo by Wisconsin Rare Disease Alliance (@WiRareAlliance)Photo by Wisconsin Rare Disease Alliance (@WiRareAlliance)Photo by Wisconsin Rare Disease Alliance (@WiRareAlliance)Photo by Wisconsin Rare Disease Alliance (@WiRareAlliance)Photo by Wisconsin Rare Disease Alliance (@WiRareAlliance)Photo by Wisconsin Rare Disease Alliance (@WiRareAlliance)Photo by Wisconsin Rare Disease Alliance (@WiRareAlliance)Photo by Wisconsin Rare Disease Alliance (@WiRareAlliance)Photo by Wisconsin Rare Disease Alliance (@WiRareAlliance)
Wisconsin, today is Election Day! WI Rare Disease Alliance reminds you to make time to vote. Your voice matters! Polls are open until 8 p.m. Find your polling place and preview your ballot at MyVote.wi.gov. Bring an acceptable photo ID. #WisconsinVotes #ElectionDay
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How has navigating your child's diagnostic journey affected your ability to work or perform daily activities? Survey closes October 31st!
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Ever wonder how long it takes a newborn screening panel nomination to get approved in Wisconsin? Here is the Gaucher disease timeline. #gaucherdisease #nbs #raredisease
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A baby can look perfectly healthy and still have a serious condition. Newborn screening looks for concerns before symptoms appear. #NewbornScreening #EarlyDetection #statezebranetwork
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September may be ending, but newborn screening advocacy continues all year. Learn what is happening in your state. Ask questions. Stay informed. Share your voice. #NewbornScreening #RareDiseaseAdvocacy #StateZebraNetwork
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Wisconsin Rare Disease Alliance retweeted
Rare & Ready Coalition (@rare_ready) profile picture
Rare & Ready Coalition
@rare_readySep 15
A few drops of blood can make a lifetime of difference. This #NewbornScreeningAwareness Month, let’s celebrate the simple tests that help give babies the healthiest possible start. 💛 #RareandReady
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A tiny sensor can help detect critical congenital heart defects before symptoms are obvious. That’s the newborn heart screen. #NewbornScreening #CCHD #StateZebraNetwork #WIRare
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Why screen so soon? Because some serious conditions can cause harm before symptoms appear. Early screening creates an opportunity for early action. #NewbornScreening #RareDisease #WIRare #StateZebraNetwork
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A newborn hearing screen is quick and painless and can help identify hearing loss early. Early answers mean earlier access to support. #NewbornScreening #HearingScreening #StateZebraNetwork #RareRising
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In Wisconsin, Advisory meetings can be found here: slh.wisc.edu/clinical/newbor…. The nomination process can be found here: dhs.wisconsin.gov/newbornscr…. #NBS #Rarediseaseadvocacy
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Healthy-looking does not always mean there is nothing happening underneath. Newborn screening helps find serious conditions before symptoms appear. #NewbornScreening #RareDisease
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Meet the blood spot screen: a few drops of blood, usually collected 24–48 hours after birth, can screen for serious conditions where early treatment matters. #NewbornScreening #RareDisease
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Wisconsin screens for 51 conditions. Let's advocate to increase that number! #NBSAwarenessMonth #newbornscreening #StateZebraNetwork
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September is #NewbornScreeningAwarenessMonth. A small screen can make a big difference by helping identify serious conditions early, when treatment may have the greatest impact. #NewbornScreening #RareDisease #StateZebraNetwork
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Back to school with rare can come with a few extra things on the checklist. A little preparation, and a lot of communication, can help make the transition a little easier. #backtoschool #rarefamilies
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#pwsawareness
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Together we move forward. Small actions create big impact. Remember, for families... every day is rare disease day. #rarediseasemonth #rarediseaseday #wirare
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Join us tomorrow for Rare Disease Day! RSVP wirare.org/childrens-museum
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Policy accelerates innovation. The 21st Century Cures Act (2016) Accelerated innovation, centered patience, and advanced treatments for rare diseases. #rarediseasemonth
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It stems from the medical adage, "When you hear hoofbeats, think horses, not zebras," which teaches doctors to look for common illnesses, but the rare disease community adopted the zebra to symbolize their unique, often overlooked, and "invisible" conditions. #rarediseasemonth
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