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.  

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   


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      

Mobility, Click here    

Diet and nutrition, Click here     


Raynaud's, Click here    



World Scleroderma Day 29th June 2016, Click here

World Scleroderma Day 29th June 2017, 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 UK Parliamentary Reception 

2017 Rare Disease Day Flashback  

More unmet clinical needs  

Rare Disease Day 2016



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



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


Scleroderma Awareness Month Campaign 2016, Click here

Links

View video, here   

Preamble - 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  


#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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