About Us
Founders, Stacy Pike-Langenfeld and Anne Rugari, formed KrabbeConnect, a 501 (c)(3) in 2017, to bridge the gap between 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.
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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!
Brackets are open! Get yours here - krabbeconnect.org/kcevent/2024-march-madness/ ... See MoreSee Less
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All the feels when a much-needed item is obtained to add support and comfort to someone living with #KrabbeDisease
We had to share because this happened as a result of YOU- thank you for supporting the work of #krabbeconnect! ... See MoreSee Less
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Did you know we made an update to "Our Heroes" form? You can now link your Facebook page to your loved one's photo. How? Click on the link, attach the same photo, or provide an updated photo, then copy and paste your CaringBridge Page or your Facebook page, etc where it asks: Links to Your Hero's Story (News, Blog Articles, Video, Facebook Page, etc.)
Why is this page important:
- allows newly diagnosed families to feel as though they are not alone in this journey.
-researchers can better understand the impact over time on the number of families impacted by this rare rare disease.
-gives KrabbeConnect board strength and courage to get fighting until we #curekrabbe as a community! ... See MoreSee Less
Krabbe Disease Heroes - KrabbeConnect
krabbeconnect.org
The KrabbeConnect Hero page was created for individuals living and no longer living with Krabbe disease. This page helps others to understand the impact of the disease, helps educate healthcare profes...0 CommentsComment on Facebook
Do you want to be the next board VP? Send us your resume at info@krabbeconnect.org
Not interested but know someone who might? We would love for you to share this post!
#curekrabbe #openboardposition ... See MoreSee Less
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This might be just the fun you're looking for and, it supports a good cause #curekrabberabbe
Buy your bracket/s now and complete your bracket/s when they open on March 17th. Don't worry, KrabbeConnect will email bracket purchasers a reminder email.
Let the March Madness begin! ... See MoreSee Less
2024 March Madness - KrabbeConnect
krabbeconnect.org
March Madness is Here!! Join our NCAA basketball tournament bracket challenge and have a chance to win some money, have fun, and help support the mission of KrabbeConnect! How to Play Step 1 Purchase ...0 CommentsComment on Facebook
Happy Thursday! We invite you to make sure we have up-to-date contact information on file for you. We are not known for weekly emails as we post most of our information on social media. At times, we have an important update that we need to ensure you're aware of - should you want to "be in the know." We invite everyone to scan the QR code or click this link -https://tinyurl.com/7hez4227
This will take less than 30 seconds of your time. Thank you for being part of the #krabbeconnect community! ... See MoreSee Less
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