Together, we are more than scleroderma

Scleroderma (also known as systemic sclerosis) is a rare disease that can affect connective tissue throughout the whole body, both inside and out.[1,2] Everyone with scleroderma has a slightly different combination of symptoms, which is why there are many different experiences of scleroderma.[2]

Because scleroderma is so rare, you might not know much about it. It can be hard to find clear information on scleroderma and difficult to know what it all means.

More than Scleroderma™ has been developed to support and guide you during your journey, by providing information and resources that you can trust, all in one place.

It summarises the current scientific knowledge, latest news, and real-life experiences, and provides handy resources to help you along the way.

Across the European Union and the United States, a rare disease is defined as affecting fewer than 1 person in every 2,000. [3,4]
adjusting to scleroderma diagnosis
Adjusting to your diagnosis
You can’t compare scleroderma to any other disease. There’s no standard course, everybody’s different.

Patient stories

Listen to stories from others with scleroderma

I’m retired and I really loved my work. But now I love other things.
You have to keep going.
Don’t panic, and find pleasure in the small things.
I just have to think positive, that’s how I think of it.
scleroderma patient grazia
Lung problems
I realised I had a problem with my lungs when I couldn’t do the things I did before, like hiking in the mountains. But I take my time and enjoy doing what’s possible for me.
Support groups
You are not alone in the world of scleroderma. Information, support and advice are available. Find your local support group below.

References

  1. Derrett-Smith E, Denton C. Systemic sclerosis: clinical features and management. Medicine. 2010;38(2):109-15.

  2. Varga J, Abraham D. Systemic sclerosis: a prototypic multisystem fibrotic disorder. J Clin Invest. 2007;117:557-567.

  3. European Commission. Rare Diseases. https://ec.europa.eu/health/rare_diseases/policy_en Accessed July 2017.

  4. U.S. Food & Drug Administration. Orphan Drugs Act – Relevant Excerpts. Updated Aug 2013. https://www.fda.gov/forindustry/developingproductsforrarediseasesconditions/howtoapplyfor
    orphanproductdesignation/ucm364750.htm
    Accessed May 2017.

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