#003: International ‘Rare Diseases Day 2022’
Today, the 28th of February 2022 is ‘Rare Disease Day’: a day to raise awareness and generating change for the 300 million people worldwide living with a rare disease, their families and carers. With so many things going on in the world around us, it’s very easy to put off something like this, simply ‘because it's rare’. Let’s make a change today.
As a nurse specialist (MSc) I have the opportunity to generate change for those who are living with a rare disease, specifically those who are living with a Neurofibromatosis syndrome (NF). Every day I hear unique stories of adolescents and young adults, about the effect NF has on their (quality of) life: invisible and visible effects in many different ways. Combining cure, care, education and research I can set goals as a (first) step in turning the invisible into the visible. But also, too often we underestimate the power of a listening ear, the smallest act of caring, all of which have the potential to turn a life around. Like I once (or maybe way to often) said to everyone around me: Sometimes I inspire my patients, but more often they inspire me. They inspire me to provide (more and more) insights about every topic that effects (quality of) life for the people who are having NF. And with those insights, making the change possible.
One of my personal goals (besides work-related goals) is taking part of the most unpredictable RUN ever organized in the Netherlands. This run is organized by Let’s Beat NF to raise money for scientific research (and make tumors among children with NF to stop). For more information take a (long) look at www.runexpected.nl. Maybe we will be standing side by side at the start of this event on the 21th of May 2022.?
Maybe I can inspire YOU to make a change.
