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Current Events
Rare Disease Day
What are you doing for Rare Disease Day 2023? Krabbe disease affects approximately 40 to 50 patients worldwide per year but on Tuesday, February 28th we are part of one BIG FAMILY as we celebrate Rare Disease Day along with the 7,000 other rare conditions.
#curekrabbe News
Are you interested in being the face of our Krabbe disease newborn screening state fact sheets? We’re on a mission to help bring more education and awareness to Krabbe disease newborn screening. All 50 states must be testing for this condition now to prevent a delayed diagnosis, especially in the most severe forms.
You can be the story to help change Krabbe disease. See which states across the USA do not have a Krabbe disease fact sheet. If your state is not listed, we invite you to share your story. Learn more here!
Upcoming Events
#curekrabbe Family Conference
KrabbeConnect is hosting its first in-person #curekrabbe Family Conference in Tampa Florida, April 21st-23rd, 2023. The family conference will feature scientific, advocacy, and family support sessions. The conference is designed to empower patients and their families and caregivers by providing information and tools to help navigate Krabbe disease. KrabbeConnect wants you to use this time to connect and learn from others walking in your shoes, hear from the medical and research community on recent updates, and get to know the companies supporting Krabbe disease.
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