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Current 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, 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.
#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
#2023 CureKrabbe Challenge
Are you up for a challenge this summer? Our community of patients experience challenges each day due to their Krabbe disease diagnosis. Please join us for our third annual #curekrabbe Challenge: Bridging the Border run, walk, swim, bike event. Help us to help those individuals affected by Krabbe disease. Registration opens April 1st. Challenge runs May 15-June 15th. Register early to to receive your #curekrabbe swag! You can make a difference and help KrabbeConnect get one step closer to #curekrabbe.
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