From a standing start 2 years ago, we now have over 400 members in this community. For many groups, this would be a celebration, but I find it so sad that over 400 people need to be here.
With any rare disease, often it’s those suffering and their carers who know the most about the day to day issues of living a journey that can be difficult and at times so worrying.
So together let’s celebrate that we have each other. Let’s celebrate the help we give each other; the common bond that brought us here in the first place and the knowledge that we are not alone.
Take care, Ian