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!
Some feel-good Friday news! All the details can be found here - krabbeconnect.org/kcevent/the-krabbe-family-warrior-meet-up-at-the-ulf-conference/
Registration is through ULF. That link is here-https://ulf.org/news/conference-2/family-register/ ... See MoreSee Less
1 CommentComment on Facebook
Thank you Lesa! Looking forward to seeing you again <3 ((hugs))
Check it out. A family has donated this great item. Email us at info@krabbeconnect.org if you're interested in this item for your loved one living with #krabbedisease ... See MoreSee Less
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We are starting a 12-week series, posted on Mondays - Know Our Board!
Why? We want you to understand the individuals who hold positions of influence and decision at KrabbeConnect. It's important to us that donors, volunteers, company stakeholders, and the public, know us. This helps you assess the credibility and integrity of our organization to help #curekrabbe!
This week we want you to meet Wendy. She is incredibly savvy and knowledgeable when it comes to board governance. Read her full biography here - krabbeconnect.org/about-us/board-members/ ... See MoreSee Less
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Such a kind woman! Thank you Wendy!
mailchi.mp/5484c81afc8a/krabbeconnect-april-fast-fact-news ... See MoreSee Less
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We have some pretty awesome educational videos on KrabbeConnect.org to help families and the greater public understand #KrabbeDisease
Check out Transplant Alone is Not a Cure-
youtu.be/hf6w3UbRM_s?si=WQd3PYiyfnz6SHRq ... See MoreSee Less
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Attention families impacted by #krabbedisease - #krabbeconnect is actively looking for patients or parents/caregivers of patients who are affected by #krabbedisease to better understand the burden of disease for infantile and late infantile Krabbe patients. If you’re interested in participating, learn more here: www.engagehealth.com/survey/TakeSurvey.aspx?SurveyID=8lKJ6l53 ... See MoreSee Less
1 CommentComment on Facebook
Dear, can I register?