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 educational activities within the Krabbe community.
Primary Objectives
- Advocacy
- Awareness
- Education
- Research
- Support for Patients & Caregivers
Socials
