GBS/CIDP is classified internationally as a 'rare disease’ and Rare Disease Day is celebrated each year on the last Tuesday in February.
Often the most common questions relating to GBS/CIDP are “What is it”, “Why have I never heard about it” and “Why do we not know about this devastating condition” etc.
The good news is that it is because it is rare.
The not so good news is that it is highly likely you are reading this because you and/or someone you know has been in some way impacted by GBS/CIDP. However, there is more good news.
The theme of this year’s celebration is 'Research’. Currently there is research being conducted in Sydney trying to unlock the intricacies of CIDP, to develop new models of treatment and perhaps longer term a cure. I know personally some of the team working on this research and others by reputation only.
With adequate ongoing funding and the collaboration of so many great investigative minds, the future looks much brighter and it is being conducted in Australia which in itself is a great bonus for those with CIDP who want to take part.
Further, Rare Disease Day is about raising awareness and having that conversation with others to develop a greater understanding of the diversity within us and to help remove the isolation that often results from living with a rare disease.
The GBS Association continues to take and also create opportunities to raise awareness of this insidious condition. As Chair I try to hold the GBS banner as high as my CIDP impacted arms can go and then some more. Our logo is representative of that effort and support.
I encourage all those impacted by GBS/CIDP to have a look at the Rare Disease Day website (click here to visit).
In particular I was drawn to their promotional videos from previous years that are truly thought provoking and inspirational.
Chair, GBS Association of NSW Inc.