Sunday, 12 March 2017

Why Global Collaboration Is So Important. Scleroderma, Raynaud’s, Autoimmune Rare Disease. Nicola Whitehill.

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: NIHR 'Research gives hope to Rare Disease patients', Click here  

  


 
Rare Disease Day 2019: Leaving a Legacy Gift, Click 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     

2017 Rare Disease Day Medical Research  


2016 Rare Disease Day Patient Voice   

2016 Rare Disease UK Parliamentary Reception       

  

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.


To read about medical research at the scleroderma unit, Click here   

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:







supported by a medicaldream team’ 
(expert specialist as the clinical lead).

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  

2018 Scleroderma Awareness Raising and Medical Research, Click here    


SCLERODERMA:

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         

Mobility, Click here      

Diet and nutrition, Click here      


Raynaud's- How to Diagnose, Click here        

'All you need to know', 2016 Awareness Video, Click here    

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   

 

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.  

Read more, here.    

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 2018, Click here  

World Scleroderma Day 2017, 29th June, Click here    

World Scleroderma Day 2016, 29th June. Origins of the date, Click 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  
 
To view the UK treatment guidelines for Raynaud’s Phenomenon, Click here   

To view the EULAR treatment guidelines, Click here   

To view Thermograph Video, Click here    

To view Thermograph image, Click here    

   
My Raynaud’s reality, Click here     


The global Raynaud's trailblazer - Dr Howell and I, Sept 2017

To view Nailfold Capillaroscopy equipment (used to identify possible blood vessel damage), Click here   

Invisible Disability Awareness Video, Click here

To read My ‘Invisible Disability’ experience, Click here   

50 Shades of Blue, Click here



 

For latest updates follow / subscribe:  

@SclerodermaRF 

@RaynaudsRf 

Twitter, Instagram, Blogger, YouTube, Facebook Page:

#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. 

  


  
Last Update: Feb 2020.       



Why Global Collaboration is so important to the
Scleroderma, Raynaud’s, Autoimmune Rare Disease patient. 











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