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Base bibliográfica - GERAL

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2025-08-15 01:16:46
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Título: The impact of living with a rare disease : barriers and enablers of independent living and social participation : a rare barometer survey
Autor(es): Fatoumata Faye, Raquel Castro, Jessie Dubief
Publicação: Paris : EURORDIS, 2025
Descrição física: 46 p. : il., figuras, tabelas ; [doc. eletrónico]
Resumo: Contents; 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
Assuntos: DOENÇAS RARAS | ACTIVIDADES QUOTIDIANAS | INTEGRAÇÃO SOCIAL
Veja também: FAYE, Fatoumata | CASTRO, Raquel | DUBIEF, Jessie
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Localização: DE 079 (INR)
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