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)

On 30^th August 2024, Rare Diseases International (RDI), the Arab Republic of Egypt, the State of Qatar and Spain co-hosted a public webinar on the campaign for a World Health Assembly (WHA) Resolution on Rare Diseases in 2025. The event featured discussions of why such a resolution is critical, what it can provide to people living with a rare disease (PLWRD) regionally and nationally and what needs to be done in order for the campaign to succeed.

Despite recent global advances in recognizing the unmet needs of PLWRD, notably the 2021 UN Resolution on Persons Living with a Rare Disease and their Families, the community still faces a number of significant challenges. In particular, limited access to treatments and care, delayed diagnosis, and elevated financial burden. These struggles are often exacerbated in low- and middle-income countries.

A WHA Resolution on Rare Diseases would help address these challenges by building on the momentum generated by the UN Resolution and instituting a comprehensive, health-focused global framework for rare diseases with clear targets and deadlines for all WHO Member States. The campaign for such a Resolution was initially spearheaded by RDI, with Egypt, Qatar, Spain, Malaysia, and France agreeing to act as co-sponsors. (©orphanews 2024.09.18)