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!
Wishing you a wonderful day! ... See MoreSee Less
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Maryland has become the 13th state to screen for #krabbedisease
This success would not be possible without Love for Lily and Baby Parker's Promise! Thank you for your fierce advocacy.
#curekrabbe #newbornscreeningsaveslives ... See MoreSee Less
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Thank you to all the amazing families who joined us at the Krabbe Family Warrior Meeting! 💚 Your strength, stories, and support mean everything to us at KrabbeConnect. Together, we build hope, connection, and a brighter future for all Krabbe warriors.
A special thank you to our sponsors:
Rosenau Family Research Foundation
Bravery for Avery
Dawson’s Drive to Save Lives
#curekrabbe #KrabbeConnect #StrongerTogether ... See MoreSee Less
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We’re thrilled to welcome Michelle Salvo as our new Vice President!
Michelle brings a deep commitment to advocacy, collaboration, and community. With her leadership, we look forward to making an even greater impact on the lives of individuals and families navigating Krabbe disease.
Please join us in congratulating Michelle as she steps into this important role! 🙌
Full bio here - krabbeconnect.org/about-krabbeconnect/board-members/
#curekrabbe #krabbeconnect ... See MoreSee Less
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Anjee Wavrick and Lucas are bravely turning their grief into purpose—honoring their young son’s memory by raising awareness about the rare disease that took him too soon. Let's lift their family up by sharing, commenting, and spreading the word about Connor's Kure for Krabbe
#KrabbeDisease #curekrabbe #StrongerTogether ... See MoreSee Less
North Idaho mom raises awareness after son dies from rare disease
www.khq.com
COEUR D'ALENE, Idaho – A North Idaho mother is on a mission to raise awareness about a rare genetic and neurological disorder after her young son's battle with it came0 CommentsComment on Facebook
A great article featuring #krabbeconnect Co-Founder, Stacy Pike-Langenfeld. In this insightful article from the University of Minnesota College of Pharmacy, Stacy shares why healthcare must go beyond prescriptions and the clinic walls.
Our favorite quote from our Co-Founder is as follows: "Patients with rare diseases typically understand every aspect of their condition intimately and have been calculating everything on the back end."
What's your favorite quote? Tell us in the comments. ... See MoreSee Less
Beyond the Clinic Walls: Understanding the Complete Patient Experience
www.pharmacy.umn.edu
The Value of Patient and Family VoicesIn the world of healthcare, particularly for those with rare diseases, the gap between clinical assessments and lived experiences can be vast. Stacy Pike-Langenfe...3 CommentsComment on Facebook