Interview on World Scleroderma Day 2015

Watch a specially recorded message for World Scleroderma Day 2015 by Ms. Ramona Kanters, founder of the patient support group in the Netherlands, and learn about the everyday impact of Scleroderma.

The interview is recorded by Actelion and published on their Youtube channel.

Unveiling Scleroderma



This World Scleroderma Day 2015 we will be “unveiling Scleroderma”.

Organisations across the globe are taking part in the campaign to raise awareness for 2.5 million individuals diagnosed with scleroderma worldwide.

25 seconds for 2.5 million

You can help us raise awareness by recording a 25-second video about your experience of scleroderma and sharing with your social networks. Use the hashtags to view your video on the main WSD website. #WSD15 #unveilscleroderma #scleroderma #worldsclerodermaday

Help us create change

On the 30th June FESCA aisbl will be unveiling scleroderma at European Parliament, Brussels. This event aims to raise awareness amongst MEPs, policy makers and stakeholders to tackle inequity of care and ensure every scleroderma patient in Europe has access to quality care.

Support this event by signing the pledge on the World Scleroderma Day website.

Paul Klee, Kettledrummer 1940, 270 (coloured paste on paper on cardboard), 34.6 x 21.2 cm, Zentrum Paul Klee, Bern.

Paul Klee, Kettledrummer 1940, 270 (coloured paste on paper on cardboard), 34.6 x 21.2 cm, Zentrum Paul Klee, Bern.

The gifted Swiss artist Paul Klee made painting his life’s work, but it was strongly influenced by his scleroderma, as this painting chosen as icon for the first World Scleroderma Day demonstrates.

He died June 29, 1940.


Download the poster for destribution: World Scleroderma Day 2015 Poster

Actemra Looks Promising in Scleroderma

Encouraging results were seen for tocilizumab (Actemra) in the treatment of diffuse systemic sclerosis (SSc) in a proof-of-concept study by Christopher P. Denton, MBBS, of University College Londo.

At 24 weeks, a numerically favorable response was seen on modified Rodnan skin scores and lung fibrosis among patients randomized to tocilizumab compared with those receiving placebo. The study is now continuing with a phase III trial that includes a greater number of patients.


Read the entire article at>>


Scleroderma Healthcare Report

Sclerodermie Advies & Voorlichting (Scleroderma Recommendation & Information – SAV) initiated the Scleroderma Healthcare study in 2013.

The principal reason was that the owner of SAV, Ramona Kanters, suffers from this disease and has made it her life objective to improve healthcare and quality of life in scleroderma. In this setting up to 200 patients were interviewed and the team administered a questionnaire.

The questionnaires were analyzed for 65 of these patients, 59 female and 6 male.

Read the whole report by Ramona Kanters and Mieke Rovers.
PDF: Scleroderma Healthcare Report 

For more information, please visit the Sclerodermie Advies & Voorlichting website.

2014 Fesca Newsletter

Please find below the latest FESCA newsletter with all sorts of stories from around Europe and some other interesting articles.

In this newsletter we bring you an update on how World Scleroderma Day 2014 was held in many European counties, wake-up call to us all, the DeSScipher project and much more.


2014 Fesca newsletter

Please click here for more newsletters.

A gender gap in primary and secondary heart dysfunctions in systemic sclerosis: a EUSTAR prospective study

The diagnostic rate of systemic sclerosis demonstrates a strong gender bias. EUSTAR performed recently a prospective observational study using the latest 2013 data extract from the EULAR scleroderma trials and research (EUSTAR) cohort.

The study concluded that although more common in women, systemic sclerosis appears as strikingly more severe in men.

Read the abstract here.

Inventiva receives positive opinion on orphan drug designation in the European Union for IVA337 – a treatment for Systemic Sclerosis (SSc)

With few approved drugs available in SSc, this approach could significantly improve the treatment options in the future.

Dijon, France, November 3, 2014 – Inventiva, a drug discovery company that focuses on therapeutic approaches involving transcription factors and epigenetic targets, today announces that the Committee for Orphan Medicinal Products (COMP) at the European Medicines Agency (EMA) has given a positive opinion on the designation of IVA337 as an orphan medicinal product.

IVA337 is Inventiva’s lead clinical candidate for the treatment of Systemic Sclerosis (SSc).

This positive COMP opinion is a key milestone in our clinical development plan for IVA337,” said Pierre Broqua, chief scientific officer and co-founder of Inventiva. “Our clinical candidate acts on several components of fibrosis to deliver a unique therapeutic approach to SSc patients.”

“This favorable opinion reflects the quality of Inventiva’s drug discovery programs and strong capabilities in fibrosis research,” said Jean-Louis Junien, Inventiva’s science advisor. “We are looking forward to entering into a phase 2a proof of concept clinical trial in 2015.”

“IVA337 has strong potential for becoming a breakthrough therapeutic option for SSc patients,” said Professor Yannick Allanore, professor of rheumatology, University Paris Descartes and INSERM U1016, who is collaborating with Inventiva on this exciting project.

IVA337 is a patent protected NCE (New Chemical Entity) that has previously demonstrated good tolerability, safety and efficacy in phase 1 and 2 studies in an unrelated indication. IVA337 has been investigated in several preclinical models of fibrotic disorders and reverses established skin fibrosis in curative settings.


Read more

View the original release



Stream the opening session from EULAR PARE in Zagreb LIVE

‘Healthy Ageing with a rheumatic or musculoskeletal disease (RMD)’ – 17th EULAR ANNUAL EUROPEAN CONFERENCE OF PARE

Watch the Opening session on 7 November 9 – 11.20am CET

View it on YouTube (in html 5 Format) :

Glossary of Scleroderma Terms

Often we catch a word related to scleroderma which we do not understand and makes it even more difficult to explain to family and friends.

What does CREST, Capillaries, Esophagus, Dilate, Malabsorption, Pulmonary fibrosis and Telangiectasia mean?

Check Out Scleroderma Foundation’s “Glossary of Scleroderma Terms”. You might find a word or two you have been wondering about.


Edgar Stene Prize 2015

Every year EULAR and the Standing Committee of PARE offer the Edgar Stene Prize for the best essay on a previously determined topic. The Stene Prize is EUR 2’000 and includes travel to the Annual EULAR Congress of that year with hotel accommodation for up to four nights as well as an invitation to attend the Opening Plenary Session and the Congress Dinner at the EULAR congress.

At the Opening Plenary Session of the forthcoming European Congress of Rheumatology in Rome, Italy, on 10 June 2015, the Edgar Stene Prize will be awarded to the winning essay on the topic

“Taking control of my life: working together with health professionals to achieve my personal goals”

EULAR invite people with rheumatic and musculoskeletal diseases (RMDs) to write about their personal experiences and the role that health professionals have played in supporting them to live as independently as possible, achieve important personal goals, and to take control of their lives. What have you been able to achieve and how? Each small step counts and we look forward to hearing many inspirational stories. In this context, health professionals may include your nurse, your primary care doctor, your rheumatologist and other specialists, your physiotherapist, your psychologist – in brief any of the health care team around you. What could be improved in your country and if you have access to all the health professionals you need. What should an ideal relationship between health professionals and people with RMDs look like?

As in the past, EULAR encourage their national EULAR member organisations of PARE to organise national competitions for people with a rheumatic or musculoskeletal disease (minimum 16 years of age). Competitors should be invited to submit an essay not exceeding 2 pages (A4) in their own language to their national EULAR member organisation by 31 December 2014.

Please find the rules on this link.

Please note

Interested individuals should get in touch with their national EULAR member organisation of PARE – listed on – and ask them if they are organising the Stene Prize Competition in their country.

The best entry from each country will be submitted for the final decision made by the jury elected by the PARE Standing Committee.