Why Global Collaboration is so important to the
Scleroderma, Raynaud’s, Autoimmune Rare Disease patient.
The 4th
Systemic Sclerosis World Congress took place recently in Lisbon, Portugal,
February 18-20, 2016, organised by the World Scleroderma Foundation.
‘is a non profit,
non-governmental foundation based in Switzerland, which functions as a
research organization in favour of patients suffering from scleroderma’.
Mission Statement:
‘The World Scleroderma
Foundation (WSF) is dedicated to initiating and supporting research in scleroderma in
all its aspects in all regions of our planet.
Our commitment is to
facilitate patient oriented research independently but also in collaboration
with existing other organisations and learned societies working in this field.
Support is in the form of
project grants, expert advisory panels and knowledge dissemination platforms.
Patient groups as well as allied health professionals will be an integral part
of the WSF structure.
WSF will liason with
society, industry and government in an open and dynamic fashion which
nonetheless remains independent of regional, political or industrial pressures.
The WSF is
committed to improving the quality of life for scleroderma sufferers and their
families.
The
WSF is the host and organizing body of the World Scleroderma Congress
which takes place every second year in differing locations.’ ….
‘In 2010, the first World
Scleroderma Congress took place in Florence, Italy under the recently formed,
Swiss based World Scleroderma Association (w-s-a.net). Followed by, Madrid
2012, and Rome 2014’.
The Congress is an
opportunity to bring together any person who is involved in, or with,
scleroderma from all over the world. This, ranges from patients / family
members, pharmaceutical reps, to medical professionals, involved in the care /
optimum treatment and management of the systemic sclerosis patient.
‘In 2010, the anticipated
attendance of 500 expanded to the enthusiastic attendance of 1500 physicians,
scientists, patient groups and industry from 61 countries. Patients were
represented by 129 members of the Federation of European Scleroderma
Associations (FESCA) and even some patients from the Scleroderma Foundation of
America were able to attend.’
Fast forward to 2016 and the
same enthusiasm was displayed, with, this year, over 300 patients attending the
Lisbon Congress, making a total of 1180 attendees from 51 countries overall,
including Brazil and the USA.
There was an extensive
schedule over the course of the 3 days, including academic sessions where
medical peers shared their most recent clinical findings, as well as patient
engagement sessions, providing a practical, invaluable, approach to living with
the diagnosis.
Due to my tin man body, I
was unable to attend the Congress in person, and I was very sad to have not
been able to meet up with some of my fellow international patients.
However, I was extremely grateful for social
media, and in particular, Scleroderma News and FESCA for frequently posting
about the events as they were happening live on Facebook and Twitter.
There were many exciting highlights with
break through clinical results and findings being presented.
One particular new
highlight was the launch of ‘The Journal of Scleroderma and Related Disorders’ which is the ‘Official Journal of
the World Scleroderma Foundation and The European Scleroderma Trials and Research group (EUSTAR)’, with 3 issues per year to be published:
The Aims and Scope of the journal:
‘The Journal of Scleroderma
and Related Disorders, the official independent journal of the World
Scleroderma Foundation and EUSTAR, is an international, multi-disciplinary,
peer-reviewed publication targeted to scientists and clinicians interested in
systemic sclerosis, scleroderma, and other related autoimmune and fibrotic
diseases.
The journal publishes high
quality, original research articles on the epidemiology, natural history,
pathophysiology, diagnosis, treatment and outcome of these diseases as well as
reviews and thought-provoking editorials and commentaries, with the aim of
becoming the leading worldwide reference journal in the field of scleroderma
and related diseases.’
From a patient perspective
- the launch of this journal is extremely encouraging. It will provide a
perfect platform for all of the medical advances in the diagnosis to be shared,
so that data can be built on and progressed, with a global collaborative
approach.
Which, of course, is of
huge benefit to Ssc patients who are living on a day to day basis, managing
their symptoms by way of disease modifying agents, which focus on symptom
suppression, at best. And, with Ssc being classified as a rare disease, patient
numbers are sparse for eligibility to satisfy stringent clinical trial
criteria.
Thereby, a global approach
can ease this restraint on future improved efficacious treatments coming to the
market place and improving the Ssc patient experience.
Here is the link to watch
the main sessions which took place at this year’s Congress.
It is with huge thanks to
FESCA for making these recordings available!
And, a BIG request to WSF
and FESCA for the next Congress, which is taking place in Bordeaux in 2018, for
the main sessions to be available via live stream….please…. J
Although, it is my sincere hope that I will be able to attend in person, having
started regular massage sessions to try and ease my joints and pain….. (living
the dream)…
So, Who is FESCA?
‘FESCA, Federation of European Scleroderma Associations aisbl, acts at a
pan-European level to promote and achieve its objectives in alignment with the
aims of the national groups it represents.
As an umbrella group, FESCA supports its member organizations, while the
support of individual sufferers of scleroderma remains the sole remit of
national organizations.
FESCA’s objectives include encouraging the active involvement of
politicians and pharmaceutical companies, working with doctors to secure
earlier diagnosis and better treatments, and creating greater awareness of
scleroderma so that those who suffer from it can access proper, equitable
care.
To do this, FESCA facilitates collaboration among
national associations to share ideas and projects, and works towards the
evolution of a political, social, and medical environment that facilitates the
achievement of the FESCA vision.’
Here are the Member
Organisations of FESCA and the contact links:
Belgium League for Chronic
Inflammatory Connective Tissue Diseases http://www.cibliga.be secretariaat@cibliga.be
Patients Association for
Scleroderma (APSB) http://www.sclerodermie.be sclerodermie@clair.be
Croatia The Croatian
Society For Patients With Scleroderma (CSPS) http://www.huos.hr huos@huos.hr
Cyprus Cyprus League
Against Rheumatism http://www.rheumatism.org.cy cyplar@cytanet.com.cy
Denmark Danish Scleroderma
& Raynaud’s Association http://www.sklerodermi.dk info@sklerodermi.dk
Finland Finnish Scleroderma
Association http://244846.edicypages.com marjo.makela@ebaana.net
France French Scleroderma
Patient Organization http://www.association-sclerodermie.fr info@association-sclerodermie.fr
Hungary Hungarian
Scleroderma Association (Országos Scleroderma Közhasznú Egyesület)
http://www.scleroderma.hu scleroderma@freemail.hu
Ireland Raynaud's &
Scleroderma, Ireland http://www.irishraynauds.com info@irishraynauds.com
Italy Association for the
Study of Systemic Sclerosis and Fibrosanti Diseases http://www.assmaf.org info@assmaf.org
Italian Association to
Scleroderma Fight http://www.ails.it ails-an@libero.it
Italian Groupe for the
Struggle to the Scleroderma http://www.sclerodermia.net gils@sclerodermia.net
Pugliese Association
Arthritis Patients http://www.apmar.it info@apmar.it
Germany Patient
Organization for Scleroderma http://www.sklerodermie-sh.de sklerodermie@t-online.de
Norway The Norwegian
Rheumatic Organisation http://www.sklerodermi.no sklerodermi@revmatiker.org
Poland Pro Rheumate – Group
of Scleroderma Patients http://www.twardzina.pl bealew23@wp.pl
Portugal The Portuguese
League Against Rheumatic Diseases http://www.lpcdr.org.pt lpcdr@lpcdr.org.pt
Romania The Romanian
Association of Scleroderma Patients (APSR) http://www.sclerodermie.ro/ contact@sclerodermie.ro
Spain Spanish Scleroderma
Association http://www.esclerodermia.org a.e.esclerodermia@wanadoo.es
Sweden The Swedish
Rheumatism Association http://www.reumatikerforbundet.org info@reumatikerforbundet.org
Switzerland Swiss
Association of Scleroderma Patients http://www.sclerodermie.ch info@sclerodermie.ch
The Netherlands N.V.L.E.
Patient Organization for Lupus, Scleroderma and MCTD http://www.nvle.org info@nvle.org
U.K. Raynaud’s &
Scleroderma Association (RSA) http://www.raynauds.org.uk info@raynauds.org.uk
The Scleroderma Society
http://www.sclerodermasociety.co.uk info@sclerodermasociety.co.uk
Brazil:
Maria do
Rosário Costa Mauger E-mail: abrapes@yahoo.com. Rua Dom João VI, nº 103 - Vila
Nogueira Campinas - São Paulo - Brasil CEP : 13.088-005
By uniting together across
the world, our patient community can help the medics / scientists/
pharmaceutical companies achieve better improvements for our day to day
reality, as we all share the same dream – for the world to become scleroderma
free.
#SclerodermaFreeWorld
#RaynaudsFreeWorld
Please donate a few pounds
to help fund vital medical research where 100% of your donation will be used
for Research purposes:
An edited version of this article was published here, in my Column with Scleroderma News.
March 2016.
Scleroderma Family Day
2020
25th
Anniversary Meeting
The Atrium, Royal Free
Hospital, London, NW3 2QG
Chair: Professor Chris
Denton
PROVISIONAL PROGRAMME
09.30 – 10.00 Registration
and Coffee
10.00 – 10.20 Welcome Dame
Carol Black
Prof Chris Denton &
David Abraham
10.20 – 10.40 What
is a Biopsy? Dr Kristina Clark
10.40 – 11.05 Dental
aspects of Scleroderma Prof Stephen Porter
11.05 – 11.25 Gastrointestinal
problems – Dr Fiza
Ahmed
shedding
new light on old problems
11.25 – 11.50 Pulmonary
hypertension and the heart Dr Gerry
Coghlan
11.50 – 12.15 Scleroderma
cohort studies – Dr
Francesco
‘Learning
from our patients’ del Galdo
12.15 – 14.15 LUNCH
BREAK – see below
14.15 – 14.45 25
years of progress – Prof
Chris Denton
from
‘black box’ to ‘positive trials’
14.45 – 15.15 International
speaker – Dr
Madelon Vonk
Scleroderma
Management in Netherlands
15.30 Raffle
Lunchtime Discussions Groups /
Demonstrations include:
Clinical Trials Rachel
Ochiel and team
National Institute of Health Research Christine Menzies
Drug Information / monitoring Pharmacy
Massage Keith Hunt MBE
Pulmonary Hypertension Education / nursing Sally
Reddecliffe/Adele Dawson
Rheumatology Laboratory Research
Laboratory Staff
Scleroderma Education / Nursing Louise
Parker/ Joseph Cainap
Thermography Dr Kevin Howell
SRUK Ollie Scott
Sjogren’s syndrome British
Sjogren’s Society
To Read My Articles:
Gift in My Will, Click here
Planning for the Future, Click here
Rare Disease Day:
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:
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 2019: 11am 97.4RockFM headlines, NO CURE, Click here
Rare Disease Day 2018 – Research, Taking
Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
2018 Scleroderma Awareness Raising and Medical Research, Click here
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.
Read more, here.
I had the pleasure of being a presenter and part of the European co-hort who gave a presentation at the European Parliament, Brussels, in honour of World Scleroderma Day 2015.
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.
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
Please DONATE to help
fund medical research at The Scleroderma Unit,The Royal Free Hospital, London.
Alternatively, to make a direct donation to fund medical research via the Royal Free Charity, Scleroderma Unit, Click here
100% of your monies will be used for medical research purposes only. NO wages or admin costs. Thank You.
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.
provides the brightest light,
for the illumination of
the rare disease patients’ plight.
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 overall.
For optimum
patient care, 3 hallmarks preside: 
INVESTMENT in MEDICAL RESEARCH is CRUCIAL.
To read my articles:
Celebrating 20 years of being a patient at the Scleroderma Unit, Click here
2019 New Challenges, Click here
NIHR Video: 'My
Experience of Clinical Trials', 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
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
SCLERODERMA:
Global Patient Profiles 2018 Video, Click here
Unmet Medical Needs, Click here
Calcinosis Video, Click here
The scleroderma tooth fairy, Click here
Skin Cancer and scleroderma, Click here
Unmet Medical Needs, Click here
Calcinosis Video, Click here
The scleroderma tooth fairy, Click here
Skin Cancer and scleroderma, Click here
 |
| Sept 2017 |
 |
| Prof Chris Denton and I, Sept 2017 |
 |
| June 2019 |
 |
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.
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. Along with the
Raynaud's world trail blazer, Dr Kevin Howell.
I am truly humbled and inspired by their work ethic and commitment to
their patients.
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 original diagnosing doctor, that I
was looking at a 15month prognosis.
 |
| Chat Magazine May 2019 |
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. Read more, here
World Scleroderma Day
2015, 29th June.
 |
| James Carver, myself, Prof Chris Denton |
I had the pleasure of being a presenter and part of the European co-hort who gave a presentation at the European Parliament, Brussels, in honour of World Scleroderma Day 2015.
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.
To view the presentation, Click here
Raynaud's:
October:
Raynaud's, Click here
 |
| The global Raynaud's trailblazer - Dr Howell and I, Sept 2017 |
For latest updates follow / subscribe:
@SclerodermaRF
@RaynaudsRf
@SclerodermaRF
@RaynaudsRf
Twitter, Instagram, Blogger, YouTube, Facebook Page:
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
Alternatively, to make a direct donation to fund medical research via the Royal Free Charity, Scleroderma Unit, Click here
100% of your monies will be used for medical research purposes only. NO wages or admin costs. Thank You.
Last Update: Feb 2020.
Why Global Collaboration is so important to the
Scleroderma, Raynaud’s, Autoimmune Rare Disease patient. 
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