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. Read More
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
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
This event is new and it’s replacing our “A Million Dreams Gala.” Why? It’s important to KrabbeConnect to move things around the country giving other families the opportunity to witness the generosity of the community and to attend these special events. Welcome to the Ten Candles, Endless Hope event page, dedicated to Tori’s Birthday Benefit in support of the […] Read More