FESCA & friends: News

Stay up-to-date on FESCA’s work as well as what’s going on in the fields of Scleroderma and Systemic Sclerosis. Come back to our news section on a regular basis, and we’ll keep you covered on all things related to the disease, be it research, conferences or the initiatives of our national member organisations.

Most recent:

Help us to keep smiling

Help us to keep smiling

We invite you from all over the world to post a picture/video with smiles on social medias like twitter, facebook, instagram etc with the hashtag #ScleroSmile

All news:

World Scleroderma Day 2018

World Scleroderma Day 2018

You really liked our campaign from last year: Scleroderma will not take my smile. So why not do the campaign another year, but still a bit different than last year.

FDA grants Fast Track designation to nintedanib

FDA grants Fast Track designation to nintedanib

FESCA is very happy to share the news, that the U.S. Food and Drug Administration (FDA) has granted Fast Track designation to nintedanib for the treatment of systemic sclerosis with associated interstitial lung disease. (SSc-ILD).

Scleroderma will not take my smile

Scleroderma will not take my smile

World Scleroderma Day 2017: We invite you from all over the world to post a picture/video with smiles on social medias like twitter, facebook, instagram etc with the hashtag #ScleroSmile

2 surveys on quality of care and cross-border healthcare

2 surveys on quality of care and cross-border healthcare

Following several years’ of involvement in EU-level discussions on healthcare policy and patient safety, EPF is now conducting a survey to explore the perceptions of patients about what matters most about “quality” of care.

Collaboration between FESCA, SSoC and BI

Collaboration between FESCA, SSoC and BI

In April, FESCA and the Scleroderma Society of Canada signed an agreement with Boehringer Ingelheim with the intention of working together to advance clinical research and improve awareness of systemic sclerosis (SSc) also known as scleroderma.

Scleroderma Support Group Survey

Scleroderma Support Group Survey

Do you have scleroderma? Are you interested in helping advance research on scleroderma support groups? If so, please lend a hand by completing this short 10-15 minute survey!

Actemra Looks Promising in Scleroderma

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.

Scleroderma Support Group Survey

Scleroderma Healthcare Report

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

Mini newsletter from Fesca

2014 Fesca Newsletter

The latest FESCA newsletter with all sorts of stories from around Europe and some other interesting articles.

Glossary of Scleroderma Terms

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.

Stream the opening session from EULAR PARE in Zagreb LIVE

Edgar Stene Prize 2015

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.

Upcoming congress in Belgium

Upcoming congress in Belgium

On October 18th 2014, the “A.P.S.B. Association des patients sclerodermiques de Belgique” organise the 6 th FRANCO-BELGE of scleroderma on 2014, October 18th in “La Halle aux Draps” Tournai Belgium.

DeSScipher project close to its end

The DeSScipher Project

DeSScipher is the 1st international EC-funded research project, and currently also the largest project, on the rare disease systemic sclerosis (SSc).

New therapies – AIMSPRO

New therapies – AIMSPRO

The Food and Drug Administration has at the end of February 2014 granted Orphan Drug designation to the therapy AIMSPRO, for systemic sclerosis.

Stream the opening session from EULAR PARE in Zagreb LIVE

Edgar Stene Prize 2014

Every year EULAR and the Standing Committee of PARE offer the Edgar Stene Prize for the best essay on a previously determined topic.

Scleroderma Support Group Survey

PROMIS – Quality of life survey

Doctors at the University of Michigan Health System, are conducting a piece of research called PROMIS (Patient Reported Outcomes Measurement Information System) in rheumatology.

Rare Disease Day 2014

Rare Disease Day 2014

Rare Disease Day is held the last day of February each year and is the occasion to raise awareness for rare diseases.

Rheumatic diseases in children

Rheumatic diseases in children

EUSTAR and FESCA have developed a survey, in several languages, about the personal reactions of those with SSc to their disease.

Press release: FESCA sides with EURORDIS

Press release: FESCA sides with EURORDIS

FESCA aisbl shows solidarity with EURORDIS as it issues a Joint Statement to sound alarm on Data Protection EU Regulation and amendments that would hamper rare disease research and health research.

Participate in the EUSHNeT survey!

Participate in the EUSHNeT survey!

In an effort to improve non-pharmacological care for scleroderma patients, the EUSHNet project is attempting to evaluate the existing situation in health professional practice in scleroderma across European countries.

Scleroderma research

Scleroderma researchFESCA, Federation of European Scleroderma Associations aisbl, encourages and undertake surveys, research projects and clinical trials related to the systemic sclerosis disease, and the publication of the results of any such research.

FESCA is always looking for better therapies. This is why we are partners with many different pharma companies. Pay our Scleroderma projects section a visit, and learn more about scleroderma research projects we're involved in.

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