KrabbeConnect

Connecting Patients and Research

     

We are working towards a day in which each patient receives an early diagnosis, has access to state-of-the-art care, and lives a life free of Krabbe 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 an early diagnosis, has access to state-of-the-art care, and lives a life free of Krabbe 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.

KrabbeConnect Presents 1st Poster at 2019 NORD Rare Summit

Co-Founders, Stacy Pike-Langenfeld and Anne Rugari presented their first poster, "Disease Burden and Treatment Considerations in Krabbe Disease: The Caregiver Perspective." The poster will help connect industry to the caregiver perspective on disease burden, life impacts, therapeutic innovations, advocacy organizations, and approaches to advances. KrabbeConnect truly values the perspective of those impacted by the disease and thanks the families who graciously participated.

Grab your copy of the poster here.

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 Kevin

Being diagnosed with Krabbe disease is difficult and daunting. Perhaps you've experience a complicated journey of symptoms and misdiagnoses or its possible your child was diagnosed through the newborn screening test. Whatever your personal story, our Outreach Coordinator, Kevin, understands the fight for answers and the need to connect with someone who's lived through the Krabbe disease journey. Kevin is the father of Collin Cushman. Together, with the help of their family, friends, and medical team, they helped Collin battle Krabbe disease for 8 years. Now, Kevin is eager to help you!

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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.

Krabbe Cookie Challenge - Ongoing Awareness Campaign

January 26th-31st: Florida’s Children’s Week

Feb. 2nd, 2020: Superbowl Squares Fundraiser

April/May 2020: Winner’s Choice Virtual Fundraiser

September 2020: #CureKrabbe Campaign for Leukodystrophy Awareness Month

October 20th, 2020: A Million Dreams Gala

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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 an early diagnosis, has access to state-of-the-art care, and lives a life free of Krabbe disease.

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