It's already February 2021 and many people around the world hold onto hope that brighter days are near as covid-19 vaccines are being distributed as quickly as possible. We are so very thankful for teams around the world who worked diligently, day and night, to bring a vaccine to clinics. Yet, when the dust settles amidst the pandemic, many families in the rare disease community will continue managing pandemic-like feelings of, isolation, depression, exhaustion, limited resources, lack of treatment, and the looming presence of death, as a result of a rare disease diagnosis.
You see, patients and caregivers who are required to #BeRare are a special group of people. This band of #BeRare people are unique, inquisitive, innovative, brave, and among some of the most incredible people. In our small little community, we are impacted by a disease called Krabbe, formally known as Globoid Cell Leukodystrophy. No, it is not pronounced Crabby but like this—krab A. This disease is rare, instills havoc on the brain, spinal cord, and the nervous system, and has no cure.
However, Krabbe disease is one of more than 7,000 identified rare conditions and we have 1 day dedicated to our #BeRare community-Sunday, February 28, 2021. This year, our organization encourages our families, our followers, our stakeholders, and more, to get involved this month in our #BeRare initiative.
3 Ways For You to Participate:
At KrabbeConnect, we are one of many organizations working diligently to change the lives of those diagnosed with a rare condition. We exist so those diagnosed with Krabbe disease have a network of individuals who don’t focus on the rarity of their disease. Instead, our #BeRare families focus on the sharing of resources, knowledge, and support because we do not want any patient or caregiver to feel alone in their rare disease journey.