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:
2022 highlights
Watch our highlights video showing some of our great achievements in 2022.
All news:
Are you living with diffuse scleroderma?
Are you living with diffuse scleroderma?
Would you like to be involved in a clinical study testing a new investigational drug for use in Diffuse Scleroderma?
If so, you may be eligible to take part in the DECODE Scleroderma Study
This is Living!
FESCA is proud to be a partner of a the new This is Living campaign launched last month by Boehringer Ingelheim.
Our newsletter for 2021 is out!
We are happy to share with you our latest newsletter. Read about World Scleroderma Day 2021, projects, our next world congress and more.
Public access to medical records – why is progress so slow?
BMJ presents a series of webinars on the topic medical records.
Kids get scleroderma, too!
A Virtual Conference for Parents and Guardians of Children Who Have Scleroderma, 23th October 2021.
Opinion article: The patient’s journey to a diagnosis
Annelise, a Danish scleroderma patient for many years talks about the patient’s journey towards a diagnosis.
Testimony: António Pereira, music teacher
Meet António Pereira who has lived with and fought against Scleroderma for 40 years.
Testimony: Tânia Vieira, mother
Meet Tânia Vieira who talks about the biggest passion many mothers can relate to.
Opinion article: The importance of Patient Associations
Elsa Mateus – President of the Portuguese League Against Reumatic Diseases talks about the importance of patient associations.
Testimony: Rute Correira, skydiving
Meet Rute from our World Scleroderma Day poster, who have decided that Scleroderma will never overcome her.
Patients with Scleroderma are much more than their disease
FESCA, the Federation of European Scleroderma Associations, is ready to celebrate another World Scleroderma
Day with a campaign to raise awareness of Scleroderma, also known as Systemic Sclerosis.
EULAR COVID-19 and COVAX Database
A tool for rheumatologists and other healthcare professionals for RMD patients.
Protect your skin
Skin care is very important when you have systemic sclerosis.
Joining forces in spreading awareness
Come with us on a roadtrip along with Scleroderma Framed in order to spread awareness of Scleroderma.
COVID-19 catalogue
Find reliable information on scleroderma & COVID-19, official pages with information and much more.
Edgar Stene Prize 2021
Win €1000 by writing about digital solutions that benefit your life as a person with an RMD.
Focus on your wellbeing
Find the right tools to help you focus on your wellbeing.
Influenza vaccination or not?
The northern hemisphere is entering autumn and winter and so is the seasonal influenza.
Participate in online survey
Do you have diffuse scleroderma? Your help is needed in this survey.
Great achievement in Sweden
The Swedish member of FESCA got a second place award in Sweden.
Food choices & Scleroderma
Study on the impact on various diets that might impact symptoms in Scleroderma.
Scleroderma, the physical and emotional impact
Article by doctor Susana Oliveira, graduated Hospital Assistant and Systemic Sclerosis Consulting Coordinator at the Professor Doutor Fernando Fonseca Hospital
Schutz vor Covid-19-jetzt nicht nachlassen
Artikel von Maria José Guimarães, Pulmonologin, Koordinatorin des pneumologischen Dienstes des Krankenhauses von Luz-Guimarães.
Do not make it easy!
Opinion article by Dr. Maria José Guimarães, Pulmonologist, Coordinator of the Pneumology Service of the Luz-Guimarães Hospital
Our smile is vulnerable!
Protect yourself to protect us! This is the 2020 World Scleroderma Day campaign by FESCA
PRESS RELEASE : Patients with Scleroderma more vulnerable to COVID-19
The COVID-19 pandemic forced us to redefine our campaign message and to highlight the importance of protecting patients with scleroderma.
EULAR Awards : Edgar Stene Prize 2020
The winner of this year is diagnosed with scleroderma. Read her essay here.
Surveys on patients’ experiences
Participate in surveys to help the researchers, doctors, patient organizations and more to learn more about the patients with RMDs and COVID-19
PATIENT CONGRESS cancelled
Due to the coronavirus situation the PATIENT CONGRESS in Prague has been cancelled.
Buy your medicine via authorized channels
The European Medicine Agency is urging the general public NOT to buy medicines from unauthorized websites.
COVID-19 – advice for you
We know these are worrying times. We have gathered information to answer your questions and concerns.
Scleroderma & COVID-19: A Conversation with the Experts
Join the webinar on Scleroderma and COVID-19 this Saturday, March 21.
Message from Committee for Medicinal Products for Human Use on Ofev
Read about positive opinion recommending a change to the terms of the marketing authorisation for the medicinal product Ofev.
POSTPONED: 6th World Scleroderma Patient Congress
NEW DATE: July 12-14, 2020
FESCA 2019 Newsletter
We are happy to share with you the FESCA 2019 Newsletter. Read some inspiring stories from our members, and how they celebrated World Scleroderma Day 2019.
6th World Scleroderma Patient Congress
FESCA is delighted to announce that the next World Scleroderma Patient Congress, which takes place in Prague from March 5-7, 2020, will be live-streamed.
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
World Scleroderma Day 2019
PRESS RELEASE: European associations align in the battle against systemic sclerosis for World Scleroderma Day 2019
Latest newsletter from FESCA
We are happy to share with you the latest newsletter from FESCA.
Juvenile scleroderma inceptions cohorte
The juvenile scleroderma inceptions project has the aim to learn more about juvenile Systemic Sclerosis.
New video for World Scleroderma Day 2018
We are very happy to show you the new video for 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.
I attended the 5th SSc World Congress
The congress was an opportunity for doctors, healthcare professionals and patients to gather, share and present new medical findings, research and results.
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).
Phase 2 clinical study for patients with dcSSc or PAH
The American company, Cumberland Pharmaceuticals, is conducting a phase 2 clinical study evaluating the safety and effectiveness of a new oral drug product.
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
Scleroderma app – now available for download
The Project Scleroderma Patient Support App, among other features, allows patients to track and chart symptoms on a daily basis and keep a running diary of notes to share with their physicians.
Orphan Drug Designation Granted to Nintedanib
Press Release – Orphan Drug Designation Granted to Nintedanib for Treatment of Systemic Sclerosis, including Associated Interstitial Lung Disease
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.
Efficacy and Safety of Tocilizumab
Efficacy and Safety of Tocilizumab in Participants With Systemic Sclerosis (Clinical trial)
Woman and pregnancy study
University of Nicosia in Cyprus, where medical students are in the medical program of St George’s from the University of London, is conducting a study to analyse the most common and high-risk pregnancy complications experienced by women with rheumatic diseases.
IMPRESS 2 Study
Patients with systemic sclerosis who are planning a pregnancy may be interested in participating in an international observational prospective study on pregnancy in women with systemic sclerosis.
Latest news from the FASST trial
Read latest FASST newsletter on the research.
Hand in Hand for a better future
June 29 is World Scleroderma Day – join us in Hand in Hand for a better future.
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.
What is systemic sclerosis?
Boehringer-Ingelheim has developed an illustrated infographic (like a cartoon) on systemic sclerosis.
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!
FASST – A trial targeting fibrosis in the skin
The purpose of this study is to evaluate the effectiveness and safety of IVA337 for the treatment of Diffuse Cutaneous Systemic Sclerosis.
Videos from 4th Systemic Sclerosis World Congress
The sessions in the auditorium were recorded, and we are happy to share those with you.
DeSScipher project close to its end
With the help of FESCA and other contributing centers the DeSScipher project had become the largest prospective observational research project ever on systemic sclerosis!
Men’s Room at World Scleroderma Congress
A men-only group encourages male patients to speak about different scleroderma-related issues happening in their lives.
Mini newsletter from Fesca
Our latest newsletter, which is a mini newsletter on recent events involving Fesca is ready.
FESCA holds event in EU Parliament
PRESS RELEASE: To celebrate World Scleroderma Day 2015, FESCA held the European Parliamentary event “Unveiling Scleroderma: Hidden Truth” on June 30 in Brussels.
Interview on World Scleroderma Day 2015
Watch a specially recorded message for World Scleroderma Day 2015 by Ms. Ramona Kanters.
Unveiling Scleroderma
This World Scleroderma Day 2015 we will be “unveiling 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 Healthcare Report
Sclerodermie Advies & Voorlichting (Scleroderma Recommendation & Information – SAV) initiated the Scleroderma Healthcare study in 2013.
2014 Fesca Newsletter
The latest FESCA newsletter with all sorts of stories from around Europe and some other interesting articles.
Gender gap in heart dysfunctions in SSc
The diagnostic rate of systemic sclerosis demonstrates a strong gender bias.
Positive opinion on orphan drug designation
With few approved drugs available in SSc, this approach could significantly improve the treatment options in the future.
Stream the opening session from EULAR PARE in Zagreb LIVE
Watch the Opening session on 7 November 9 – 11.20am CET.
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.
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
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.
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).
June 29 is World Scleroderma Day
Join us in turning towards the sun like the sunflower does, to celebrate World Scleroderma Day 2014.
Scleroderma Day events in France
Please find attached this post the full programme for Scleroderma Day 2014 in France.
GILS stands up the first Scleroderma Units in Italy
Board and members of GILS, Italy, in agreement with the scientific committee, with some hospitals and Institutions will get some Scleroderma Units off the ground.
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.
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.
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.
3rd systemic sclerosis world congress
The Third World Systemic Sclerosis Congress was held in Rome from 6-8 February 2014, and an audience with the Pope preceded it for people with scleroderma.
Pope blessing Scleroderma Patients in Rome
Pope Francis lays hands in blessing on FESCA Scleroderma Patients at audience in Rome.
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
EUSTAR and FESCA have developed a survey, in several languages, about the personal reactions of those with SSc to their disease.
Survey on personal reaction on Scleroderma
EUSTAR and FESCA have developed a survey, in several languages, about the personal reactions of those with SSc to their disease.
DeSScipher – to decipher the optimal management of SSc
On the 1st April 2013 the first international EU-funded research project “DeSScipher” started!
New treatment investigated for SSc
Systemic sclerosis (SSc) is a rapidly progressing systemic form of scleroderma for which there are currently no approved treatments
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!
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.
The Edgar Stene Prize winner 2009
The Stene Prize winner 2009 from Finland: Emmi Myöhänen (diagnosed with juvenile linearic scleroderma)
Scleroderma research
FESCA, 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.