Where without doubt, the global golden hallmarks for such are:
As well as, the patients show the unmet clinical needs, where the medical research is slowly progressing.
This is the ‘Official Journal of World Scleroderma Foundation and the European Scleroderma Trials and Research group (EUSTAR)’.
|My 44th birthday, having been diagnosed with systemic sclerosis aged 24, and given a 15month prognosis|
This bi-annual event is the hub of the most up to date understanding of the entire scleroderma disease process.
However, due to the multi complex body systems involved in the disease process, research still falls way behind with providing an understanding as to the cause, and effective treatments, leading to a cure.
An edited version of this article was published here, in my Column with Scleroderma News.
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