About KrabbeConnect
Founders, Stacy Pike-Langenfeld and Anne Rugari, formed KrabbeConnect, a 501 (c)(3) in 2017, to bridge the gap between Krabbe disease science and patient knowledge.
The idea for KrabbeConnect originated from the 2015 Family Centered-Krabbe Translational Research Network meeting (FC-KTRN), a collaborative meeting between researchers and families to aid in solving the uncertainties of Krabbe disease. Through KrabbeConnect, the foundation provides a platform to amplify the voice of patients, aiding researchers and drug developers in accelerating research for better treatments for Krabbe disease.
Learn More about KrabbeConnect
KrabbeConnect’s dedication and efforts will advance research, provide family support, enhance education, and raise awareness, one step at a time. The organization will encourage patients, caregivers, medical scientists, clinicians, industry, and the government to work together quickly to assure a better life for patients. KrabbeConnect believes advances are made when we align ourselves with the same goal, improving the quality of life of those diagnosed with Krabbe disease.
We encourage you to learn more about us by understanding our Mission, Vision, and Multi-Center Approach here. If you have questions or want to connect with us, please Contact Us. We would love to hear from you!
A Tuesday friendly reminder!
Get started today by clicking this link- bit.ly/4iNlV9R ... See MoreSee Less
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We invite you to share your voice! Akron Children's Hospital LeukodystrophyThe leukodystrophies comprise a group of progressive, genetic disorders mainly affecting the central nervous system (CNS). Most leukodystophies result from a disruption of the growth of the myelin sh Clinic is conducting a survey on the financial burden of leukodystrophies. This survey is brief (15-20 min) and anonymous. The first 100 participants who take the survey will receive a token of appreciation.
Get started here today -
redcap.chmca.org/redcap/surveys/?s=9TTFLNA3A4H4CENF ... See MoreSee Less
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Join us Sunday, June 1st to "Swing for Saylor," and others impacted by #krabbedisease. We want to fill the course! Your participation helps further the mission and work of #krabbeconnect.
Scan the QR code to purchase tickets or learn more about this event!
#curekrabbe ... See MoreSee Less
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What a great way to recognize a provider - now accepting nominations until April 30th. See details below! ... See MoreSee Less
The 2025 Courageous Provider Award: Nominations are OPEN!
bit.ly
The Courageous Provider Award annually recognizes clinicians providing exceptional family-centered care in circumstances of serious childhood illness. Nominees0 CommentsComment on Facebook
Wahoo—registration is now open. We can't wait to bring #krabbedisease families together and provide you with the latest updates. This is a safe space for all families to gather and feel supported and loved.
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2025 Krabbe Family Warrior Meet-up at the United Leukodystrophy Family Conference - KrabbeConnect
krabbeconnect.org
This family meet-up will feature Krabbe-specific scientific, advocacy, and family support sessions. This meeting is designed to empower patients and their families by providing information and tools t...1 CommentComment on Facebook
This will bless so many families trying to navigate the Krabbe journey!
We're thrilled about this grant! It was inspired by KrabbeConnect, and we’re fully committed to supporting it every step of the way. Our goal is to make it easier for families navigating a Krabbe disease diagnosis by providing deeper insights into the condition’s characteristics, ultimately enhancing the conversation with newly diagnosed patients.
Read more here- lnkd.in/g7-E7cGm ... See MoreSee Less
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For a registry? Why not towards finding a way to restart gene therapyA type of therapy that offers hope and promise for a cure for many genetic disorders. A working copy of the gene replaces the non-working copy of the gene. Gene therapy is at the forefront of many trials?
Yay!!!! Thankful these parents will now how better care for their little ones!
Hail to the Victors -- in so many ways!