KrabbeConnect
KrabbeConnect's mission is to be the source of comprehensive information and access to resources for patients with Krabbe disease. The foundation will drive state of the art research by bridging the gap between science and patient knowledge. The organization seeks to revolutionize the practice of medicine by identifying, optimizing, and implementing advances in the care and cure of globoid cell leukodystrophy, utilizing a multicenter network. The organization’s goal is to achieve complete disease eradication through cooperation between patients, patient advocacy groups, clinicians, researchers, industry, and government. The organization is dedicated to the cooperative planning, implementation, analysis and reporting of controlled clinical trials, as well as observational studies and educat
Founded
2017
0
Web
krabbeconnect.org
Address
Rosemount
Home - Krabbe Disease Information and Support - KrabbeConnect KrabbeConnect Connecting Patients and Research Welcome to KrabbeConnect KrabbeConnect seeks to revolutionize the practice of medicine by identifying optimizing and implementing advances in the care and cure of Krabbe disease and globoid cell leukodystrophyAnother name for Krabbe disease a rare and usually fatal disorder of the nervous system. utilizing a multicenter network. Our goal is to achieve complete krabbe disease eradication through cooperation between patients patient advocacy groups clinicians researchers industry and government. We are dedicated to the cooperative planning implementation analysis and reporting of controlled clinical trials as well as observational studies and educational activities within the Krabbe community.
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Discussions
Odpovědí v diskuzi
1
How can we foster stronger collaboration between patients, researchers, and healthcare providers to accelerate breakthroughs in Krabbe disease treatments?
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Brooklyn Simmons
2 days ago
Odpovědí v diskuzi
1
What role do you think advocacy groups should play in shaping the future of clinical trials for rare diseases like Krabbe disease?
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Brooklyn Simmons
2 days ago
Latest reviews
Together, we can make a real impact in communities around the world. Help us bring hope and support.
Absolutely inspiring work being done by KrabbeConnect! Together we can make a difference in the lives of those affected by Krabbe disease. 💙 #KrabbeConnect #HopeForCures
Brooklyn Simmons
Product Manager
Every step towards understanding and eradicating Krabbe disease counts! Grateful for the amazing efforts of the KrabbeConnect team and all the heroes involved! 🌟 #TogetherForKrabbe #ResearchMatters
Brooklyn Simmons
Product Manager
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Eduo.org is my go-to platform for discovering nonprofit organizations that actually make a difference. The rankings, filters, and country-specific lists make it so easy to explore causes I care about. Brilliant initiative!
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