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We have partnered with FESCA to produce this animation to raise awareness of scleroderma and the symptoms to look out for. You can help us share the message and raise awareness to help others.
Support World Scleroderma Day on June 29th
We are proud to be part of FESCA (Federation of European Scleroderma Associations); an umbrella group of scleroderma patient support-and-advocacy organisations working to increase awareness, and advocate for equitable treatments for people with scleroderma throughout Europe.
Each year, on 29 June, the world’s scleroderma community comes together to recognize World Scleroderma Day.
It is a day to recognise the bravery of those who live with scleroderma (also known as systemic sclerosis), and demand equal treatment and equal care for people with the disease, both across Europe and worldwide.
This year FESCA is launching the “Find the Light to Bloom” campaign, to shine a light on the unmet needs of people living with scleroderma and urge policy-makers to make improving diagnosis, treatment and the quality of life a priority. “Find the Light to Bloom” intends to empower the scleroderma patient population and showcase that they can thrive, even though they live with such a disabling disease. This new campaign also highlights some of the unmet needs of the people living with the disease; recognising that it can take time to be diagnosed or get access to an appropriate treatment plan. But once the patients receive this treatment, they can feel more at ease, and find the light to bloom.
FESCA would really like everyone to get involved in this campaign and learn more about scleroderma: healthcare professionals, patients, families, policy-makers, but also each and every one of those who come across the campaign.
The history
In February 2010 the 1ST SYSTEMIC SCLEROSIS WORLD CONGRESS was held in Florence, Italy, with participants from all over the world attending. At the world congress it was agreed that June 29th would be celebrated as World Scleroderma Day all over the world. In just 2 short years, World Scleroderma Day was celebrated in countries all over the globe, from Europe to Australia, Canada, Brazil and India.
Why the 29th June?
The gifted Swiss artist Paul Klee made painting his life's work. His paintings were strongly influenced by his condition, systemic scleroderma. He died on 29th June 1940 and every year on this day we all join together to celebrate his determination and resilience and that of the scleroderma community across the world.
SRUK latest news
See all newsTuesday 28th November 2023
Sharing Data to Improve Lives: The SRUK Patient Registry Survey
SRUK is developing a Patient Registry, with the aim of improving outcomes for people diagnosed with Scleroderma or Raynaud's. Our Registry will be a secure, anonymous database, containing health information about people living with the conditions. It will be used to improve our understanding of Scleroderma and Raynaud's and how different people are affected over time, to help accelerate research into new and better treatments designed to improve quality of life. Read on to find out what we learned through the SRUK Patient Registry Survey, and how it will help shape our Patient Registry.
Wednesday 22nd November 2023
SRUK's response to the Autumn Statement
SRUK asks the Chancellor to consider the impact of changes to disability benefits on people with scleroderma and we renew our call for more support with energy bills for those that need it most.
Tuesday 21st November 2023
Government must expand Cost of Living Payments to protect health of those living with Raynaud's Phenomenon
Ahead of the Chancellor's Autumn Statement we are calling on the government to expand its Cost of Living Payment criteria to include people living with Raynaud’s Phenomenon.