The
Journal of Scleroderma and Related Disorders (JSRD)
Volume
1 Number 1 Jan-April 2016.
The JSRD is the official journal of The World Scleroderma Foundation, WSF, and The European Scleroderma Trials And Research Group, EUSTAR.
The Editorial headline of the first edition,
used by the Editors in Chief, Marco Matucci-Cerinic (University of Florence,
Italy) and Masataka Kuwana (Nippon Medical School Graduate School of Medicine,
Japan), reads:
‘INTRODUCING THE JOURNAL OF
SCLERODERMA and RELATED DISORDERS, a challenge for the future of our
community’
‘Systemic sclerosis (Ssc) or scleroderma
remains the disease associated with the great burden of morbidity and
mortality, even though a prominent paradigm shift in treatment strategies has
changed clinical practice of many rheumatic diseases.
Despite a series of clinical and basic
researches, the pathophysiology of Ssc has not been fully clarified, and
effective disease-modifying therapies are still lacking.
However, we strongly believe that the outlook
for Ssc and related disorders is now changing rapidly.
During the past decade, a variety of new
molecules, pathways, and cell types have been identified as critical players in
the diverse manifestations of Ssc.
Much of this research has been made possible by
the application of gene expression profiling, genomics, and proteomics with
powerful analytic platforms, such as microchip array techniques.
The importance of the epigenetic control in the
pathogenic mechanisms reflects the interplay of environment with the genome.
These cutting-edge strategies make it possible
to identify and validate novel biomarkers, and to develop precise therapeutic
targets…….
These enormous efforts significantly enhance
bench-to-bedside research interplay, and basic discoveries are promptly
translated into clinical trials at an increasingly rapid pace.
This positive feedback attracts the
pharmaceutical industry for developing novel treatment strategies, and, in
fact, many clinical trials on potential disease-modifying treatments for Ssc
are ongoing globally……’
‘In this era of reform, the Journal of
Scleroderma and Related Disorders (JSRD) has been started as an
international, multi-disciplinary, peer-reviewed journal, targeting scientists
and clinicians interested in Ssc and other related autoimmune and fibrotic
diseases.
JSRD is the official journal of the European
Scleroderma Trials and Research group (EUSTAR) and the World Scleroderma
Foundation, which supports Ssc research in all its aspects and is committed to
improving the quality of life for Ssc patients and their families.
The commemorative first issue was published in
February 2016 to coincide with the 4th Systemic Sclerosis World
Congress.
The 1st Systemic Sclerosis World
Congress was successfully held in 2010 in Florence, Italy. Since then, this
congress has become the primary platform for exchange of scientific and
clinical information through an interaction between practicing or training
physicians, scientists, health professionals, patients, and representatives of
the pharmaceutical industry throughout the world.
The number of abstracts has increased considerably
during recent years, with 455 submitted abstracts for the 4th
Systemic Sclerosis World Congress, which reflects the enthusiasm and dedication
of the Ssc community.’
The Editorial Board has the following
composition:
2 Editors in Chief, 4 Senior Editors, 5
Honorary Editors, 8 Associate Editors, 10 Assistant Editors, 73 Editorial Board
members.
The Journal is published three times a year.
The Contents page for Volume 1 Number 1 January
– April 2016 (the first edition), looks like this:
Editorials:
Introducing the JSRD, a challenge
for the future of our community, Masataka Kuwana, Marco Matucci-Cerinic
“United we win”, communication is the key for a
better future in scleroderma, Frank A. Wollheim
Paul Klee: the painter and the contribution of
the most famous scleroderma patient to art in the 20th century,
Alexander Klee
Progress and priorities in systemic sclerosis:
the next 10 years – report from the World Scleroderma Foundation
Review:
Esophageal surgeries in systemic sclerosis
(Ssc) – a systematic review of the literature, Yossra Suliman, Sachin
Srinivasas, Mary S Maish, Lisa M. Federer, Daniel E. Furst
Congress Report:
Reports from the 2015 American College of
Rheumatology congress, Jerome Avouac, Michal Tomcik, Christian Beyer
14 Oral Presentations; 12 posters, abstracts
presented at the Congress.
To access Vol.1 Issue 1 Jan - April 2016, Click here
To access the latest Advance Online
Publications, Click here
The articles included in the Advance Online
Publications section have been peer reviewed and accepted by the JSRD and are
published online after author approval.
I would urge every patient to
sign up for their own copy of JSRD.
Even if you can not understand all of the
contents due to the medical and scientific terminology, the contents provide
huge assurance to the global Raynaud’s and Scleroderma community that the world
leading experts are collaborating with each other, to improve the entire
Raynaud’s and Scleroderma patient experience.
This is very important in
relation to seeing an advancement in science, to ensure the scientific
statistic analytical parameters are met, large numbers of patients are
required, and of course, scleroderma is a rare disease, with only 2.5 million
patients worldwide.
I discussed more about Why Global
Collaboration is So Important to the Raynaud’s and Scleroderma (Systemic
Sclerosis) Patient, here
I discussed the importance of
awareness raising for 29th June World Scleroderma Day, here
I discussed the Role of Medical
Research to the Raynaud’s Scleroderma Patient, as well as the contents of
Volume 1 Number 2, May - August 2016, of The Journal, here
I discussed the importance of
Expert Specialist Centres, here
I discussed my experience of
taking part in Raynaud’s Scleroderma Clinical Trials, here
Please DONATE to help fund medical research at the Scleroderma Unit, The Royal Free Hospital, London, where 100% of your donation
will be used for research only. Thank You.
United, globally,
together, we will crack the Raynaud’s Scleroderma (Systemic Sclerosis) code.
#Scleroderma
FreeWorld
#RaynaudsFreeWorld
Living the dream Scleroderma Style,
hoping for a cure.
An edited version of this article was published here, in my Column with Scleroderma News, April 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 Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, 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: Raynauds Scleroderma Awareness Global Patients
#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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