February 28, 2026
What are you doing for Rare Disease Day 2026? Krabbe disease affects approximately 40 to 50 patients worldwide per year but on Saturday, February 28th we are part of one BIG FAMILY as we celebrate Rare Disease Day along with the 7,000 other rare conditions.
Each year, many organizations across the world are involved in efforts to advance treatments, raise awareness, and bring resources to those living with a rare disease. In 2008, the European Organization for Rare Disease (EURORDIS), successfully implemented the last day of February as Rare Disease Day. At KrabbeConnect, we want to shine a light on Rare Disease Day because we are a community of individuals faced with many obstacles. A handful of these obstacles include:
- Long investigative journey to reach the correct diagnosis
- Families navigating feelings of, isolation, depression, and exhaustion because there’s a lack of knowledge and resources
- Few if any treatments
- A looming presence of death
- Lack of respite care and financial resources for out-of-pocket medical costs
- Employment challenges
Patients and their families impacted by a rare disease are a special group of people. We must band together to be stronger, to share resources, to learn, and to create partnerships that can influence change quickly. This year we want you to be a part of our band, by inviting you to do one or more of the following:
- Show Your Stripes: Download the attached image to use on your social media pages on February 28th. If you’re having trouble adding your image, just email us your image at info@krabbeconnect.org) and we would be happy to help!
- General Community: You can be a part of a KrabbeConnect committee, email us at info@krabbeconnect.org to let us know you’re interested.
- For those interested in sharing their financial resources: You can make a donation in honor of a rare disease friend or loved one here.
