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Introduction

Rare diseases, also known as orphan diseases, affect a small percentage of the population and are often difficult to diagnose and treat due to their complexity and rarity. Patients with rare diseases require specialized care and support to manage their condition effectively. Nurses play a crucial role in managing patients with rare diseases, providing essential care, support, education, and advocacy. This thesis aims to explore the role of nurses in managing patients with rare diseases, highlighting the unique challenges and opportunities they face in providing quality care to this patient population.

Table of Contents

Chapter 1: Introduction
1.1 Introduction
1.2 Background of study
1.3 Problem Statement
1.4 Objective of study
1.5 Limitation of study
1.6 Scope of study
1.7 Significance of study
1.8 Structure of the Thesis
1.9 Definition of Terms

Chapter 2: Literature Review
2.1 Overview of rare diseases
2.2 The role of nurses in rare disease management
2.3 Challenges faced by nurses in managing patients with rare diseases
2.4 Best practices in nursing care for patients with rare diseases
2.5 Nurse-patient communication in rare disease management
2.6 Nurse education and training in rare disease care
2.7 Nurses as advocates for patients with rare diseases
2.8 Support services for nurses caring for patients with rare diseases
2.9 Ethical considerations in nursing care for patients with rare diseases
2.10 Future directions in nursing care for patients with rare diseases

Chapter 3: Research Methodology
3.1 Research design
3.2 Sampling method
3.3 Data collection methods
3.4 Data analysis procedures
3.5 Ethical considerations
3.6 Research limitations
3.7 Research validity and reliability
3.8 Research contributions

Chapter 4: Discussion of Findings
4.1 Overview of research findings
4.2 Nurses’ perceptions of their role in managing patients with rare diseases
4.3 Challenges faced by nurses in providing care to patients with rare diseases
4.4 Best practices identified in nursing care for patients with rare diseases
4.5 Implications for nursing practice and education
4.6 Recommendations for improving nursing care for patients with rare diseases
4.7 Future research directions

Chapter 5: Conclusion and Summary
5.1 Summary of key findings
5.2 Implications for nursing practice
5.3 Limitations of the study
5.4 Recommendations for future research
5.5 Conclusion

Thesis Overview

Patients with rare diseases face unique challenges due to the complexity and rarity of their condition. Managing patients with rare diseases requires a multidisciplinary approach, with nurses playing a crucial role in providing holistic care, support, and advocacy for these patients. This thesis explores the role of nurses in managing patients with rare diseases, highlighting the challenges they face and the best practices in nursing care for this patient population. The study also examines the perceptions of nurses, identifies key issues in rare disease management, and provides recommendations for improving nursing care for patients with rare diseases.

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