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Press Release

Systemic Sclerosis World Congress: Inspirational patient stories reveal the challenging realities of living with devastating rare disease

Boehringer Ingelheim
Posted on: 19 Feb 18

“I’ve learned how to cope with this disease. There are many important things which I am still capable of doing.” Anna, 36, living with scleroderma


Ingelheim, Germany, 16 February 2018 - Boehringer Ingelheim today unveils a new phase of “More Than Scleroderma: The Inside Story”, and launches the new patient website


The global initiative highlights the importance of understanding the ‘inside story’ of each individual living with scleroderma, also known as systemic sclerosis. To coincide with the Systemic Sclerosis World Congress in Bordeaux, 15-17 February 2018, new and truly inspiring patient stories are revealed, reflecting the real-life, diverse and very moving journeys of people across the world living with scleroderma. The campaign will also be launched in the U.S.


The new website features a powerful collection of photographs and video stories of people from around the world living with scleroderma, revealing the life-changing impact of the disease. 


Anna, from Szombathely in Hungary, has shared her story on the website. She wants to encourage and inspire others with the disease. “I would like to make it clear to others that they are not alone.”


Anna, 36, recalls how “Back when I was originally diagnosed, my world completely fell apart… I found everything terrifying.” She didn’t know anyone else with the disease and couldn’t find positive stories. But Anna learned how to cope with the disease, and after a difficult journey she is happy again and enjoying life. “Today I’m much more grateful for the little things,” she explains.


To see Anna’s story and those of other patients from around the world, visit and


Scleroderma is a rare and potentially fatal disease involving the skin, lungs and other organs.[i],[ii] It typically affects women in the prime of their lives, like Anna, between the ages of 25 and 55.[iii],[iv] Most people with the disease will develop some degree of lung scarring, or interstitial lung disease (ILD).1,[v],[vi],[vii] Currently, there are no approved medicines for treating lung fibrosis associated with scleroderma.


FESCA Seeks Supportive Action

Annelise Rønnow, president of FESCA (The Federation of European Scleroderma Associations) values the opportunity for broad audiences to engage in raising awareness of this rare disease.


“Better awareness of scleroderma and its signs and symptoms should help people get diagnosed earlier, so care and support can be provided,” said Rønnow. “It is so inspiring and insightful to hear the poignant journeys of people living with the disease. We support ‘More Than Scleroderma: The Inside Story’, for the information and help it can offer people affected by this little-known disease”.

Editor's Details

Mike Wood

Last updated on: 19/02/2018

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