However, sadly, my 'tin man' body has always prevented me from going, and unfortunately, this year is no exception.
I was very much looking forward to meeting everyone, including Rosario from Brazil who runs ABRAPES, the Brazilian scleroderma association, and of course the amazing Alice, from Switzerland, to name just a few!
Hope that a cure will be found, along with improved disease modifying agents.
As well as, the cause to this rare autoimmune disease, being understood.
I very much hope to be able to drag my tin man body to them, since Liverpool is the nearest city to Southport, where I live!
Where the entire donation will be used for essential medical research purposes only.
Although, sadly, I am not physically able to carry out the role.
An edited version of this article was published here, in my Column with Scleroderma News, January 2018.
To read my articles:
Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here
March Autoimmune Disease Awareness Month 2018, Click here
Global patient video, Click here
Becoming a Patient Research Ambassador for the NIHR, Click here
If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
Expert Specialist Centres, Click here
World Scleroderma Day 29th June 2016, Click here
World Scleroderma Day 29th June 2017, Click here
Why Global Collaboration is important to the Rare Disease Patient, Click here
2016 Rare Disease Day Patient Voice