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!
Know someone who's making a real difference in the rare disease community? It's time to recognize their impact! Nominations are now open for the 2025 #RAREVoiceAwards by the EveryLife Foundation!
Click here to get started - bit.ly/3Gv2WmINominations are now open!
We’re thrilled to celebrate the 14th year of the RareVoice Awards, honoring rare disease advocates who are making real policy change at the state or federal level.
Know someone who has advanced legislation or elevated the voices of the rare community in 2024 or 2025? Nominate them today! bit.ly/3Gv2WmI ... See MoreSee Less
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Regardless of disease subtype or whether a child has undergone a transplant, families consistently spend over 40 hours per week—equivalent to a full-time job—providing care.
With recent Medicaid cuts, this burden is intensifying, as families are forced to absorb even more of the cost and coordination of complex care, often without adequate support.
These reductions not only jeopardize access to essential services but also threaten the physical, emotional, and financial well-being of caregivers already stretched to their limits. ... See MoreSee Less
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Donated item. Please email us if you’re interested in receiving this chair at info@krabbeconnect.org. All requests are evaluated on a first come first serve basis.
Additional details here - bit.ly/3IgtBUC
#curekrabbe #krabbeconnect ... See MoreSee Less
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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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