“We make a Living by what we get … but we make a Life by what we give.”
— Winston Churchill
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.
Ashley Cooper lost her life to Krabbe disease at 18 months old.
A day in which each patient receives early diagnosis, state of the art care, and lives a life free of disease.
Our Multicenter Approach
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. This multi-center collaborative cause will bring improved science, institute data sharing, establish standards of care for all courses of treatment, provide educational videos and continuing education courses, develop an industry-standard patient registry, and be a resource for clinical trial opportunities.
We are in the initial stages of developing our world class website that will bring further attention to this disease for funding, grant opportunities, and industry recognition. We are working with the leading clinicians and researchers in Krabbe disease and will launch our website, www.krabbeconnect.org, no later than March 1st, 2018.
We have received an initial donation of $20,000 allowing us to begin construction of our website but we need your help to keep it going! Due to our passion for Krabbe disease we are solely a volunteer board which lets us focus completely on our mission. As you have read above, we have goals that need to be accomplished to support a revolutionary treatment for Krabbe disease which includes, a comprehensive patient registry, a data sharing database for those involved in the research of the disease, and a library of educational videos to help treat patients with this rare disease around the world. Please support this cause and donate today as Winston Churchill stated, "We make a Living by what get.... but we make a Life by what we give..."
Please consider donating to KrabbeConnect and help make a Life of a Krabbe patient better!
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