These registries, must, out of necessity to the rare disease patient, be a part of a global research network.
Time is a luxury in the life of a rare disease, and particularly so, in the scleroderma, patient.
The 5th Systemic Sclerosis World Congress is to take place in Bordeaux, France, February 15-17 2018.
Read more: Vol 1 Number 1 and Vol 1 Number 2
The expert specialist center provides not only the best patient care, but also, an invaluable opportunity to share coping and management techniques, alleviating a little of the isolation experienced by the rare disease, scleroderma patient.
An expert specialist center is at the nucleus of this.
I focussed on the Scleroderma patient Healthcare DreamTeam on Day 30 of Scleroderma Awareness Month 2016 Campaign.
This world class center of expertise, without a doubt, is a global leading light in the scleroderma global research field.
Living the dream, scleroderma style, hoping for a cure....
|'My Skin is Cured From Scleroderma' 19 years post diagnosis, Nicola Whitehill, 30.11.16|
An edited version of this article was published here, in my Column with Scleroderma News.
Planning for the Future, Click here
Rare Disease Day 2020:
Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, here
Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt here
Rare Disease Day 2020: NIHR 'Research gives hope to Rare Disease patients', Click here
Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click here
2017 Rare Disease Day Medical Research
2016 Rare Disease Day Patient Voice
provides the brightest light,
for the illumination of
the rare disease patients’ plight.
To read about medical research at the scleroderma unit, Click here
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
Unmet Medical Needs, Click here
Calcinosis Video, Click here
The scleroderma tooth fairy, Click here
Skin Cancer and scleroderma, Click here
|Prof Chris Denton and I, Sept 2017|
This year, 2020, I am celebrating 22 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.
|Chat Magazine May 2019|
|James Carver, myself, Prof Chris Denton|
I am immensely grateful to James Carver, former 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|
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
100% of your monies will be used for medical research purposes only. NO wages or admin costs. Thank You.