KrabbeConnect 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. Our goal is to achieve complete 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. KrabbeConnect is committed to pioneering a patient-centered care model and strengthening groundbreaking research by engaging the patients and caregivers with the Krabbe research community, to ensure the needs of Krabbe patients are being voiced.
Krabbe disease (pronounced krab A), is a rare genetic disorder, also known as globoid cell leukodystrophy. Krabbe disease is described as a severe neurological condition that results from the loss of the protective covering (myelin sheath) surrounding nerve cells. This protective sheath is essential to insulate the nerves and ensure the rapid transmission of nerve signals throughout the body.
Families impacted by Krabbe disease, here’s your chance to get involved in research and share your voice! The Hunter’s Hope Foundation, The United Leukodystrophy Foundation, and KrabbeConnect are partnering with Neurogene to help their team understand your experiences in Krabbe disease, your thoughts on clinical trials, and your opinions on treatments for Krabbe disease.
#CUREKRABBE 2022 Challenge is happening May 1- May 31. Register today to #curekrabbe by participating in this group virtual run, bike, walk, swim event. Click here to see how you can make a difference in the life of someone affected by #krabbedisease.
See what events and fundraisers we have currently going on! Join KrabbeConnect in helping to make a difference in the lives of those affected by Krabbe disease.
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