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.
Our Heroes
We are working towards a day in which each patient receives an early diagnosis, has access to state-of-the-art care, and lives a life free of Krabbe disease. Help us celebrate all of the Krabbe disease Heroes and join the fight to #curekrabbe!
Current & Upcoming Events
January 2025
2025 Super Bowl Square Challenge
Super Bowl squares, also known as football squares, are often a fun staple of Super Bowl parties everywhere. In 2018 we initiated this fundraiser as a fun way to drive excitement about our mission at KrabbeConnect which is, to be the source of comprehensive information and access to resources for patients with Krabbe disease. The foundation will drive state-of-the-art research by bridging the gap between science and patient knowledge. 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
Did you know Krabbe disease is an autosomal recessive disorder?
Discover the facts about autosomal recessive diseases in our YouTube video.
#curekrabbe #KrabbeDisease #autosomalrecessive
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Are you a nonprofit or researcher looking for funding to improve #KrabbeDisease - check out the opportunity below!
#curekrabbeOur Letter of Intent (LOI) deadline is January 31st, which means there are 3 WEEKS LEFT to submit your grant for consideration for funding!
Learn more and submit your LOI here: rosenaufoundation.org/letter-of-intent/
A LOI is the first step in the process to apply for grant funding.
Consideration will only be given to projects that:
1. Conduct research to develop or enhance treatments and cures for Krabbe disease and Cystic Fibrosis.
2. Promote education and awareness for the expansion of Newborn Screening, Krabbe disease, and Cystic Fibrosis; benefiting children with the increased probability of early identification and effective access to treatment.
Please email grants@rosenaufoundation.org with any questions.
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Thank you to those who participated early on the #SuperBowl2025 Fundraiser. Join us tomorrow here - Super Bowl Early Bird Name Draw
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Super Bowl Early Bird Name Draw
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Happy FriYAY. Who do you want to see play in the #Super Bowl
2 days left to grab your squares for a chance to win a donated Dunkin Donuts gift card AND a free square on the 10x10 board.
Board squares available until sold out.
#krabbeconnect #curekrabbe
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