About Us
Founders, Stacy Pike-Langenfeld and Anne Rugari, formed KrabbeConnect, a 501 (c)(3) in 2017, to bridge the gap between science and patient knowledge.
The idea for KrabbeConnect originated from the 2015 Family Centered-Krabbe Translational Research Network meeting (FC-KTRN), a collaborative meeting between researchers and families to aid in solving the uncertainties of Krabbe disease. Through KrabbeConnect, the foundation provides a platform to amplify the voice of patients, aiding researchers and drug developers in accelerating research for better treatments for Krabbe disease.
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KrabbeConnect’s dedication and efforts will advance research, provide family support, enhance education, and raise awareness, one step at a time. The organization will encourage patients, caregivers, medical scientists, clinicians, industry, and the government to work together quickly to assure a better life for patients. KrabbeConnect believes advances are made when we align ourselves with the same goal, improving the quality of life of those diagnosed with Krabbe disease.
We encourage you to learn more about us by understanding our Mission, Vision, and Multi-Center Approach here. If you have questions or want to connect with us, please Contact Us. We would love to hear from you!
Fact #5 as we enter the 18th day of September LeukodystrophyThe leukodystrophies comprise a group of progressive, genetic disorders mainly affecting the central nervous system (CNS). Most leukodystophies result from a disruption of the growth of the myelin sh... and Newborn Screening Awareness Month!
#curekrabbe #leukodystrophy #nbsawareness #krabbeconnect ... See MoreSee Less
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Happy Monday! Friendly reminder, the caregiver panel is happening today!
Registration required here -https://krabbeconnect.org/kcevent/leukodystrophy-newborn-screening-awareness-month/
#krabbewebinar #curekrabbe #leukodystrophymonth #nbsawareness ... See MoreSee Less
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Join us in uniting people from around the world to raise awareness for #KrabbeDisease. ... See MoreSee Less
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Happening Tomorrow!
This meeting will explore the different types of stem cell transplants, their effectiveness, and the latest research in treating #KrabbeDisease. Whether you’re a healthcare professional, researcher, or someone affected by the disease, this session will provide valuable information and perspectives on the nuances of stem cell therapy for this rare condition.
Register here today: krabbeconnect.org/.../leukodystrophy-newborn.../
#krabbeconnect #leukodystrophy #newbornscreening #curekrabbe ... See MoreSee Less
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Next up - Are there different kinds of leukodystrophies?
Fact #4 in honor of #NBSawarenes #leukodystrophawareness
If you feel moved to help #curekrabbe, just text the word "krabbe" to 99192 ... See MoreSee Less
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Another quick fact in honor of #leukodystrophy and #newbornscreening awareness month.
More quick facts available at krabbeconnect.org/.../leukodystrophy-newborn.../
#curekrabbe #nbsawarenes #leukodystrophawareness ... See MoreSee Less
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