03/06/2024
Oftentimes we talk about how common congenital heart disease is at 1 in 100 individuals being born with CHD. However, single ventricle disease is considered rare, affecting approximately 5 in every 100,000 newborns. I actually didn’t realize it was that few newborns until I just looked up the statistic.
There are many important reasons to highlight the fact that single ventricle disease is a rare disease, including: advocacy, awareness, research & innovation, and public health. Within these different buckets, there are a plethora of areas and topics covered, such as regulatory pathways for new rare disease treatment options - another reason to pay attention to the FUEL2 trial, even if you aren’t within the inclusion criteria for the current study. It’s a pathway for treatment options, more awareness, increased funding opportunities, additional research, and so much more. It is so important to stay informed and engaged with what is going on within the community, even if it doesn’t immediately include your specific needs. Your voice, experiences and presence create the awareness for your needs and disease state - you’d be surprised how many times priorities shift because of one person who spoke up.
I’m sharing all of this to say, “Happy Rare Disease Day!”
