Further to my recent, local ‘Page 3 Girl’ debut in my local newspaper, (published last month, during June, Scleroderma Awareness Month), I am truly honoured and humbled to have been quoted on the front page, as well as, featured within, the recently published NIHR annual report.
|NIHR Annual Report: Front Page|
|NIHR Annual Report, Case Study|
Including Med-Tech and The European Pharmaceutical Manufacturer quoting me, and naming Raynaud’s and scleroderma, in their headline story.
All of these trials were led by Prof Chris Denton, at the Scleroderma Unit, at The Royal Free Hospital.
I am not the most willing of participants of taking any drug, licensed or non licensed, at the best of times.
And, if I could not benefit directly, that, patients who may be diagnosed in the future, may benefit from the therapy, if the results proved favourable for such.
I have detailed more about my patient experience and journey, on Day 12 of my global patient profiles campaign, for Scleroderma Awareness Month 2018.
Although these unmet needs are not immediately life threatening, they cause havoc with the day to day quality of each patient’s life.
|Fellow patient Miss Universe, me, Christine and Lauren from NIHR team |
I am truly grateful for my medical ‘dream team’, made possible and available to me, by the world class leading healthcare system, the NHS.
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.