Living with a rare disease is daunting in every way imaginable. Having been a diffuse scleroderma, rare disease patient for 21 years, in my view, Research provides immense hope.
All of the trials which I have participated in, have been conducted at the Unit.
This Scleroderma Olympian is already in training, currently in full time hibernation.
However the 2016 parliamentary reception still remains one of my few patient highlights.
An edited version of this article was published here, in my Column with Scleroderma News.
2017 Rare Disease Day Flashback
for the illumination of the rare disease patients’ plight.
If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
The Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, Click here
2018 Scleroderma Awareness Raising and Medical Research, Click here
|Prof Chris Denton and I, Sept 2017|
|James Carver, myself, Prof Chris Denton|
I am immensely grateful to James Carver MEP for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.
|The global Raynaud's trailblazer - Dr Howell and I, Sept 2017|
|My article for Rare Disease Day 2016 was published on the Rare Disease Day website and the Rare Disease Day social media platforms.|