Disabilities and Barriers in rare skin disorder

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Recognising Disabilities and Barriers in rare skin disorder : key-findings of the Rare barometer  survey

  •  7 / 10 people with rare skin disorders live with disabilities;
  • 66% of respondents have difficulties with at least two of the following activities: seeing, hearing, walking/climbing stairs, remembering/concentrating, selfcare, communicating;
  • 59% find it difficult or very difficult to obtain publicly funded support such as attendant care support, home support, financial support, assistive technology, mobility aids or other support;
  • 52% experienced discrimination related to the rare disease or disability in healthcare, in employment, in education, in housing, in public accommodations and in other places;
  • 14% of people with a rare skin disorder are unemployed (in comparison, the unemployment rate in the general population was 6,1% in the European Union in 2023)