February 28, 2023
Rare Disease Day
What are you doing for Rare Disease Day 2023? Krabbe disease affects approximately 40 to 50 patients worldwide per year but on Tuesday, February 28th we are part of one BIG FAMILY as we celebrate Rare Disease Day along with the 7,000 other rare conditions.
January 2023
Super Bowl Squares 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.
April 21 - 23, 2023
#curekrabbe Family Conference
KrabbeConnect is hosting its first in-person #curekrabbe Family Conference in Tampa Florida, April 21st-23rd, 2023. The family conference will feature scientific, advocacy, and family support sessions. The conference is designed to empower patients and their families and caregivers by providing information and tools to help navigate Krabbe disease. KrabbeConnect wants you to use this time to connect and learn from others walking in your shoes, hear from the medical and research community on recent updates, and get to know the companies supporting Krabbe disease.
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.