News:
Scleroderma
news & eventsScleroderma or systemic sclerosis is a chronic connective tissue disease generally classified as an autoimmune rheumatic diseases. The word “scleroderma” comes from two Greek words: “sclero” meaning hard, and “derma” meaning skin. Hardening of the skin is one of the most visible manifestations of scleroderma.The exact cause or causes of scleroderma are still unknown, but scientists and medical researchers are working hard to make those determinations.
Scleroderma news:
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.
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
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.
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.
Positive opinion on orphan drug designation
With few approved drugs available in SSc, this approach could significantly improve the treatment options in the future.
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.
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.