DAY 22: JOURNAL OF SCLERODERMA
and
RELATED DISORDERS (JSRD)
Scleroderma Awareness Month
Raynaud's, Autoimmune Rare Disease
DAY 22 Scleroderma Awareness Month:
1 Week to go until World
Scleroderma Day 29th June....
To celebrate the launch of the
first edition of the new 'Journal of Scleroderma and Related Disorders' and World
Scleroderma Day, the editors kindly offered to Scleroderma News readers,
the annual subscription to the Journal at a discounted price, for 1 week only.
I made the Journal the subject
of a few blog posts, Click here
The contents of the Journal
show that there are very exciting times ahead for the global scleroderma
community, by way of differing biological mechanisms and processes involved in
the scleroderma disease pathway, being better understood.
This of course, is enhanced greatly by global collaboration, making the bi-annual Systemic Sclerosis World Congress a hub of pioneering scleroderma activity.
This of course, is enhanced greatly by global collaboration, making the bi-annual Systemic Sclerosis World Congress a hub of pioneering scleroderma activity.
The next
World Congress is scheduled to take place in Prague in 2020. Click here
All in all, there is still a
long way to go in reaching the light at the end of the tunnel in making a Scleroderma-Free-World, but imagine that: a #SclerodermaFreeWorld.
To read my article why global collaboration is so important to any rare disease patient, Click here
To read my article why global collaboration is so important to any rare disease patient, Click here
Research
is the key. Current areas of research interest, Click here
Abstracts from 2016 World Congress, Click here
An edited version of this article was published here, in my Column with Scleroderma News.
June 2016.
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
The Pandora’s Box of the rare autoimmune disease
Scleroderma, Raynaud's and Cancer, 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:
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
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.
VIDEO
VIDEO
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:
Early Diagnosis
Expert Specialist Centres
Access to Innovative Medicines
Where MEDICAL RESEARCH investment
is VITAL.
Research
is the key. Abstracts from 2016 World Congress, 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.
 |
| Sept 2017 |
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:
Facebook Page:
Twitter: @SclerodermaRF @RaynaudsRf
Google Plus: RaynaudsSclerodermaAwarenessGlobalPatients
#SclerodermaFreeWorld
#RaynaudsFreeWorld
#ADAM #Scleroderma
#Raynauds
#RareDisease
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.
#HOPE
Last Update: April 2018
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