The utilisation of primary health care system concepts positively impacts the assistance of patients with rare diseases despite limited knowledge and experience by health care professionals: A qualitative synopsis of the evidence including approximately 78 000 individuals

Author:

Ferreira Raquel Lemos12,do Nascimento Israel Júnior Borges34,de Almeida Victor Izidro Alves12,de Oliveira Vanuza Regina Lommez12,Marangne Larissa Gomes12,dos Santos Gameleira Flávia2,Dutra Tárcia Regina Coura12,de Oliveira Santos Daniela12,Dias Afonso Marcelo Pellizzaro15,dos Santos Paula Eduarda Alves12,de Oliveira Helian Nunes1267,Vilhena Dias Fernando Machado127

Affiliation:

1. Faculdade de Medicina e Hospital das Clínicas, Universidade Federal de Minas Gerais, Belo Horizonte, Minas Gerais, Brasil

2. Laboratório de Investigação de Pessoas com Doenças Raras (LIRA), Federal University of Minas Gerais, Belo Horizonte, Minas Gerais, Brazil

3. Pathology and Laboratory Medicine, Medical College of Wisconsin, Milwaukee, Wisconsin, USA

4. Division of Country Health Policies and Systems (CPS), World Health Organization Regional Office for Europe, Copenhagen, Denmark

5. Programa de Pós Graduação em Saúde Pública, da Faculdade de Medicina, Federal University of Minas Gerais, Minas Gerais, Brazil

6. Programa de Pós-Graduação em Medicamentos e Assistência Farmacêutica, Faculdade de Farmácia, UFMG, Minas Gerais, Brazil

7. Programa de Promoção de Saúde e Prevenção da Violência, Departamento de Medicina Preventiva e Social, Faculdade de Medicina, UFMG, Minas Gerais, Brazil

Publisher

International Society of Global Health

Subject

Public Health, Environmental and Occupational Health,Health Policy

Reference103 articles.

1. Hypophosphatemic Rickets in Colombia: A Prevalence-Estimation Model in Rare Diseases. 2018.;Huertas-Quintero;Lancet Reg Health Am,2021

2. Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database.;Nguengang Wakap;Eur J Hum Genet,2020

3. Early childhood development coming of age: science through the life course.;Black;Lancet,2017

4. United Nations. THE 17 GOALS | Sustainable Development. Available: https://sdgs.un.org/goals. Accessed: 18 October 2022.

5. World Health Organization. Primary health care. Available: https://www.who.int/health-topics/primary-health-care. Accessed: 18 October 2022.

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1. Digital solutions for rare diseases in global health;The Lancet Global Health;2024-07

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