Rare Disease Day
Rare Disease Day takes place on the last day of February every year. It's a day for our community to come together and raise awareness about rare diseases like scleroderma, with thousands of events being held all over the world.
This year, we want to highlight those people within the UK living with rare autoimmune rheumatic diseases (RAIRDs) who are not getting the care they need and are falling through the cracks.
Next month, we will publish findings from RAIRDA’s 2024 Patient Experience Survey, based on responses from 1,352 people living with RAIRDs. We have found that the average time to diagnosis from symptom onset is two-and-a-half years.
Addressing these delays is crucial to preventing further ill health, retaining the ability to work and live a normal life. It is imperative that policymakers and the new Government do not lose sight of people living with rare diseases, including non-genetic conditions such as RAIRDs, so that these people from across the UK are not left feeling “totally alone with [their] disease,” as one respondent told us.
About the survey
- An online survey was conducted by Ipsos between 22 April and 31 May 2024, of individuals aged 16 and over living with rare autoimmune rheumatic disease(s) in the UK.
- A total of 1,352 questionnaires were completed. The sample was freefind. The data was not weighted. Full survey results will be published by RAIRDA in 2025. Please contact RAIRDA at rairdauk@gmail.com for more information if required.
- RAIRDA’s 2024 Patient Experience Report is due to launch in mid-March and will provide a clear vision for improvement across key areas, which if taken on board by the government and NHS decision-makers, could change the landscape of care for people living with RAIRDs.
- RAIRDA will call on decision-makers and politicians to use the insights in the report to drive improvements in provision, such as the expansion of specialised networks to share knowledge to support secondary care, and the completion and implementation of the first ever quality standard for rare diseases.
There are lots of simple ways to get involved this Rare Disease Day, and show your colours to help to make sure our voices are heard.
Show your colours this Rare Disease Day!
SRUK supports Rare Disease Day every February, to help us ensure that scleroderma is properly represented as a rare disease. This year, we are asking you to join the global rare disease community and show your colours! This simply means that by spreading the word, you can help us to reach the policy makers, public authorities, industry representatives, researchers, educators and healthcare professionals, to raise awareness of scleroderma as a rare disease.
Social media is a great way to get started, and simply following us, sharing our posts and talking about your own experiences really does make a difference. There are lots of ideas and resources at www.rarediseaseday.org