Systemic sclerosis (SSc) is a disfiguring, disabling and potentially fatal rare disease that causes scarring of the skin (scleroderma), lungs (SSc-ILD) and other organs. Worldwide it is estimated that over two million people have systemic sclerosis and it affects mostly women in the prime of their lives, between 25 and 55 years of age. Systemic sclerosis is a complex rare disease with a variable course. It presents with a range of symptoms involving several different organs; this means it is difficult to recognize and this can delay early and accurate diagnosis.

Nurjanah’s story

How a rare disease brought the Bruggeman family together


Scleroderma Life Hacks

Video series featuring people living with scleroderma using everyday items in different ways to help them manage their symptoms.

All eyes on patients

EURORDIS has selected Boehringer Ingelheim for the first time as recipient of the prestigious Black Pearl Award 2020

The little things

In 2009 Anna was diagnosed with scleroderma. For her, however, the disease is no reason to give up. On the contrary.

Further Topics

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In this new video listen to consulant rheumatlogist Professor Denton discuss his experience diagnosing systemic sclerosis.


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