The COVID-19 pandemic has exposed and exacerbated weaknesses in our healthcare system, increasing barriers to rare disease patients accessing care and treatment. Now more than ever, it is vital that your voice is represented at both a local and national level.
Recently published research on rheumatology patients, including those with RAIRDs, has shown a reduction in the percentage of patients agreeing they felt medically supported. This percentage declined from 74% pre-pandemic to 40% during the pandemic.Source
Sloan et al (2022), Will ‘the feeling of abandonment’ remain? Persisting impacts of the COVID-19 pandemic on rheumatology patients and clinicians, Rheumatology
Whether you are affected by a rare disease and would like to share your story, or if you would be interested in campaigning for us, we would love to hear from you.
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