Why Global Collaboration Is So Important to Systemic Sclerosis Patients

Why Global Collaboration Is So Important to Systemic Sclerosis Patients

The 4th Systemic Sclerosis World Congress was held Feb. 18-20 in Lisbon, Portugal, and organized by the World Scleroderma Foundation, which describes itself as “a nonprofit, non-governmental foundation based in Switzerland, which functions as a research organization in favor of patients suffering from scleroderma.”

The Foundation’s Mission Statement:

The World Scleroderma Foundation (WSF) is dedicated to initiating and supporting research in scleroderma in all its aspects, in all regions of the world. The organization explains that its commitment is to facilitate patient-oriented research independently, but also in collaboration with existing other organizations and societies working in this field.

Support comes in the form of project grants, expert advisory panels, and knowledge dissemination platforms. Patient groups and health professionals will be an integral part of the WSF structure. The WSF will liaison with society, industry, and government in an open and dynamic fashion, but remains independent of regional, political, or industrial pressures. The foundation 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 different 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, to pharmaceutical reps, 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 1,500 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 more than 300 patients attending the Lisbon Congress this year, making a total of 1,180 attendees from 51 countries overall, including Brazil and the USA.

World Congress 2016 attendees

There was an extensive schedule over the course of the three 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 breakthrough clinical results and findings being presented. One particularly 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 three issues per year to be published:

www.sclerodermajournal.com

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’s 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 a huge benefit to systemic sclerosis 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 systemic sclerosis being classified as a rare disease, patient numbers are sparse for eligibility to satisfy stringent clinical trial criteria. Therefore, a global approach can ease this restraint on future treatments coming to the marketplace and improving the systemic sclerosis patient experience.

Here is the link to watch the main sessions which took place at this year’s Congress: http://www.fesca-scleroderma.eu/

A huge thanks to FESCA for making these recordings available.

Also, 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 … 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, what is FESCA?

FESCA, the Federation of European Scleroderma Associations, acts at a pan-European level to promote and achieve its objectives with the aims of the national groups it represents. As an umbrella group, FESCA supports its member organizations, while individuals who suffer from scleroderma are supported by theirnational 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 organizations of FESCA and the contact links:

http://www.fesca-scleroderma.eu/wordpress/wp-content/uploads/2015/09/2015_mini_Fesca_newsletter_summer.pdf

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

The Croatian Society For Patients With Scleroderma (CSPS) http://www.huos.hr huos@huos.hr

Cyprus League Against Rheumatism http://www.rheumatism.org.cy cyplar@cytanet.com.cy

Danish Scleroderma & Raynaud’s Association http://www.sklerodermi.dk info@sklerodermi.dk

Finnish Scleroderma Association http://244846.edicypages.com marjo.makela@ebaana.net

French Scleroderma Patient Organization http://www.association-sclerodermie.fr info@association-sclerodermie.fr

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 Fight Scleroderma http://www.ails.it ails-an@libero.it

Italian Groupe for the Struggle of Scleroderma http://www.sclerodermia.net gils@sclerodermia.net

Pugliese Association Arthritis Patients http://www.apmar.it info@apmar.it

German Patient Organization for Scleroderma http://www.sklerodermie-sh.de sklerodermie@t-online.de

The Norwegian Rheumatic Organization http://www.sklerodermi.no sklerodermi@revmatiker.org

Poland Pro Rheumate – Group of Scleroderma Patients http://www.twardzina.pl bealew23@wp.pl

The Portuguese League Against Rheumatic Diseases http://www.lpcdr.org.pt lpcdr@lpcdr.org.pt

The Romanian Association of Scleroderma Patients (APSR) http://www.sclerodermie.ro/ contact@sclerodermie.ro

Spanish Scleroderma Association (Spain) http://www.esclerodermia.org a.e.esclerodermia@wanadoo.es

The Swedish Rheumatism Association http://www.reumatikerforbundet.org info@reumatikerforbundet.org

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, the scleroderma patient community can help doctors, scientists, and pharmaceutical companies achieve better improvements for our daily lives, as we all share the same dream — for the world to become scleroderma-free.

Be sure to review Scleroderma News’ comprehensive, on-site coverage of this year’s 4th Systemic Sclerosis World Congress here.

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