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 sharing our Rare Disease Day Flyer because we are all in this fight together. We also invite you to do one or more of the following:
- Organizations/Industry: Send us an email (firstname.lastname@example.org) if we can assist with a resource you need for your community or lets us know about a coalition occurring where you need many rare disease voices. We’re happy to help!
- General Community: You can be a part of a KrabbeConnect committee, email us at email@example.com to let us know you’re interested.
- All Rare Disease Families: Submit your rare disease stripes photo or even better, share your story with our partner. organization, The National Organization on Rare Disorders
- Krabbe Families: Help advance research for our entire community, join KrabbeCURES.
- For those interested in sharing their financial resources: You can make a donation in honor of a rare disease friend or loved one here.