Registo em formato MARC

001 INR20250815004803
100   ^a20250815d2025    k  y0porb0103    ba
101 0 ^aeng
102   ^aFR
200 1 ^aThe impact of living with a rare disease^ebarriers and enablers of independent living and social participation^e<a >rare barometer survey^fFatoumata Faye, Raquel Castro, Jessie Dubief
210   ^aParis^cEURORDIS^d2025
215   ^a46 p.^cil., figuras, tabelas  ; [doc. eletrónico]
330   ^aContents; Executive summary; Contents; Introduction; 1. Disability; 1.1. Most people with rare diseases live with disabilities; 1.2. People with rare diseases live with diverse and complex disabilities; 2. Disability recognition; 2.1. Disability assessments are not provided to all people with rare diseases who need them; 2.2. People with rare diseases face barriers during disability assessment; 3. Independent living; 3.1. People with rare diseases find it difficult to access publicly funded support; 3.2. Most People with rare diseases who need a personal assistant do not have one; 3.3. Most people with rare diseases are satisfied with their living arrangements; 4. Social participation; 4.1. People with rare diseases face discrimination; 4.2. Work participation is limited among people with rare diseases; 4.3. Most students with rare diseases do not fully participate in education; 4.4. Community participation is limited, especially for those with disabilities; 4.5. Most people with rare diseases have a positive opinion of their social environment; 5. Method; 5.1. Questionnaire; 5.2. Data management and analysis; 5.3. Survey sample; References; Acronyms and abbreviations; List of figures; List of tables; List of boxes; Appendix
606   ^aDOENÇAS RARAS
606   ^aACTIVIDADES QUOTIDIANAS
606   ^aINTEGRAÇÃO SOCIAL
700  1^aFAYE,^bFatoumata
701  1^aCASTRO,^bRaquel^4070
701  1^aDUBIEF,^bJessie^4070
801   ^aPT^bINR^c20250815^gRPC
856   ^uhttps://download2.eurordis.org/rarebarometer/RB_Impact_Living_RD_report.pdf^zClique para aceder
859   ^uhttps://www.inr.pt/documents/11309/226343/DE079_The_impact_of_living_with_a_rare_disease/61873065-fb80-42f4-8a86-4a99ea560b42?t=1755216958584
920 n
921 l
922 m
931 20250815
933 2025
966   ^lINR^sDE 079^12025