KrabbeConnect

Connecting Patients and Research

     

We are working towards a day in which each patient receives early diagnosis, state of the art care, and lives a life free of disease.

OUR MISSION

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.

OUR VISION

A day in which each patient receives early diagnosis, state of the art care, and lives a life free of disease.

OUR MULTICENTER APPROACH

Krabbe Connect 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.

September is Leukodystrophy Awareness Month

It’s Leukodystoprhy Awareness Month! At KrabbeConnect, we think this is a perfect month to launch “Kacie” the butterfly. Kacie is beautiful yet delicate – just like each patient diagnosed with Krabbe disease.

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What is Krabbe Disease?

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 myelin sheath is essential to insulate the nerves and ensure the rapid transmission of nerve signals throughout the body.

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Connect with a Family

For those families with a loved one diagnosed with Krabbe disease, KrabbeConnect understands the diagnostic journey and the fight against the feeling of isolation. Often times, this journey took place due to the rarity of Krabbe disease coupled with the lack of knowledge among healthcare providers. Our Family Advocate Specialists are former or current caregivers of a Krabbe patient’s.

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Upcoming Events

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.

Super Bowl Squares Challenge

A Million Dreams Fundraising Gala

March Madness Brackett Challenge

Leukodystrophy Awareness Campaign

 

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Join Our Mailing List

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Contact Us

Krabbe Connect
P.O. Box 264
Rosemount, MN 55068-0264

(651) 252-4117
Info@KrabbeConnect.org

OUR VISION

A day in which each patient receives early diagnosis, state of the art care, and lives a life free of disease.

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