Welcome to KrabbeConnect
KrabbeConnect seeks to revolutionize the practice of medicine by identifying, optimizing, and implementing advances in the care and cure of Krabbe disease and globoid cell leukodystrophyAnother name for Krabbe disease, a rare and usually fatal disorder of the nervous system., utilizing a multicenter network. Our goal is to achieve complete krabbe disease eradication through cooperation between patients, patient advocacy groups, clinicians, researchers, industry, and government. We are dedicated to the cooperative planning, implementation, analysis and reporting of controlled clinical trials, as well as observational studies and educational activities within the Krabbe community. KrabbeConnect is committed to pioneering a patient-centered care model and strengthening groundbreaking research by engaging the patients and caregivers with the Krabbe research community, to ensure the needs of Krabbe patients are being voiced.
Current & Upcoming Events
November 29, 2024
2024 Krabbe Family Holiday Grant Program
As the holiday season approaches, we understand that it can be a time of both joy and challenge for families affected by Krabbe disease. We believe in the power of community, support, and sharing love during this special time. We are excited for the third year of the “Krabbe Family Holiday Grant Program,” an initiative […] Read More
ONGOING
Be the Story — Krabbe Disease Newborn Screening Campaign
Are you interested in being the face of our Krabbe disease newborn screening state fact sheets? We’re on a mission to help bring more education and awareness to Krabbe disease newborn screening. All 50 states must be testing for this condition now to prevent a delayed diagnosis, especially in the most severe forms. You can be the story to help change Krabbe disease. See which states across the USA do not have a Krabbe disease fact sheet. If your state is not listed, we invite you to share your story. Read More
Ongoing
KrabbeConnect Wine Collection
In October 2023, KrabbeConnect connected with Jennifer Tanner at Old York Cellars Winery to talk about how their group works to give back to philanthropic causes. After a month of discussion and planning, Old York Cellars helped develop a unique collection of wines aimed to raise funds and awareness for Krabbe disease. Shop Online Now […] Read More
The #krabbeconnect Hero page was created for individuals living and no longer living with Krabbe disease.
This page helps others understand the impact of the disease, educates healthcare professionals and companies on the numerous lives affected by Krabbe disease, and provides a place of remembrance.
At KrabbeConnect we never want to forget about any loved one diagnosed with Krabbe disease and gone before we could #curekrabbe.
Click the image to add your hero or to update the image of your hero today!
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
Happy Monday! Supporters, look how you helped! We hope you feel all the warm feelings as this happened because of YOU!
If you have any resources to share with #krabbeconnect, please text the word "krabbe" to the number 707070 to make a donation today.
#curekrabbre
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Another equipment donation! Equipment will be issued on a first come first serve basis.
#krabbeconnect
#curekrabbecurekrabbe
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We are grateful for any year-end donations to help us expand our efforts in #NewbornScreening. Thank you for your continued commitment to #krabbeconnect!
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Check out this holiday list for kiddos with complex medical needs. Thank you Rare Parenting for this list!
#curekrabbeCheck out or new #GIFTGUIDE for switch adapted toys!! See it here: rareparenting.com/switch-adapted-toys-kids/ #SLP
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#thankyou - we have many families we were able to help this year through our support programs because of our supporters - YOU. We invite you to learn how we support families navigating #KrabbeDisease -https://bit.ly/krabbeassistance
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Thank you krabbeconnect for the help we received. Our family is going to enjoy our holidays with a little less stress this year. We hope many other families out there can feel this same this year as well.