Wednesday, 23 November 2016
UPDATE ON WYATT THE SCLERODERMA WARRIOR
Victor Hugo — 'Nothing is more powerful than an idea whose time has come.'
Sunday, 6 November 2016
Raynauds and Scleroderma Awareness raising 2016
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
The Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, Click here
Scleroderma Awareness Month 2017 Patient Profiles Campaign, Click here
Scleroderma Awareness Month 2017 Patient Profiles Campaign Patient Index, Click here
The Pandora’s Box of the rare autoimmune disease Scleroderma, Raynaud's and Cancer, Click here
Key Event Dates 2018, Click here
Importance of an Early Diagnosis, Click here
Taking Part in Clinical Research Trials, Click here
The Importance of a Multi Disciplinary Medical ‘Dream Team’, Click here
Expert Specialist Centres, Click here
My Skin is Cured from Scleroderma, Click here
UK Guidelines for Managing and Treating Scleroderma, Click here
Fatigue, Click here
Raynaud's, 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
RARE DISEASE DAY:
The theme to this years Rare Disease Day is Research
Rare Disease Day 2018 – Research, Taking Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
2016 Rare Disease Day Patient Voice
2016 Rare Disease Day Patient Voice
2017 Rare Disease Day unmet clinical needs to the scleroderma patient
Rare Disease Day is a fantastic opportunity for the entire rare disease community to shine a spotlight on their reality, combining as one unified voice. Where, at least one commonality presides –
Medical Research provides the brightest light
for the illumination of the rare disease patients’ plight.
I highlighted other areas of medical research interest within Week 3 of my Patient Profiles Campaign for Scleroderma Awareness Month 2017.
Although rare disease patients are few in number, eg. 2.5 million scleroderma patients worldwide, (the World Scleroderma Foundation), the commonalities and golden hallmark for each rare disease patient are the same:
Expert Specialist Centres
Access to Innovative Medicines
Where MEDICAL RESEARCH investment is VITAL.
Research is the key. Abstracts from 2016 World Congress, Click here
Scleroderma Awareness Month Campaign 2016, Click here
The Family Day at the Scleroderma Unit, The Royal Free Hospital is taking place on the 19th May 2018. Browse the program, here
This year, I am celebrating 20 years of being a patient at this world leading expert specialist research centre.
I am eternally grateful to the global scleroderma trail blazers Dame Prof Black and Prof Chris Denton, whose commitment and dedication to unlocking the scleroderma enigma, is nothing other than, superhuman.
I am truly humbled and inspired by their work ethic. I am wholly appreciative for Prof Denton’s continued medical expertise and support, especially during my barrister qualifying years, 1997 - 2004.
1st March 2004, I qualified as a self employed practising barrister. Further to having been told in 1997, by my diagnosing doctor, that I was looking at a 15month prognosis.
I very much hope to utilise my professional skills and qualifications along with my patient experience, to help achieve the #SclerodermaFreeWorld dream, hoping to improve understanding and best practice, in the meantime.
For latest updates follow:
Twitter: @SclerodermaRF @RaynaudsRf
Google Plus: Raynauds Scleroderma Awareness Global Patients
Living the dream, scleroderma style.
Please DONATE to help fund medical research at The Scleroderma Unit,The Royal Free Hospital, London.
100% of your monies will be used for medical research purposes only. No wages or admin costs. Thank You.
Last Update: April 2018