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Palliative Care in Rare Diseases: A Multidisciplinary Approach to Complex and Life-Limiting Conditions
Paperback
General SociologyPoverty & Social Work
Publisher: Independently Published
Published: Feb 23 2026
Pages: 150
Weight: 0.46
Height: 0.32 Width: 6.00 Depth: 9.00
Language: English
Rare diseases affect millions worldwide, yet patients and families frequently face delayed diagnoses, fragmented care, limited treatment options, and inadequate symptom management. This book bridges the gap between rare disease medicine and palliative care, offering evidence-based strategies, multidisciplinary frameworks, and policy perspectives to improve quality of life across the disease trajectory.
- Addresses a major gap in healthcare by integrating palliative care principles into rare disease management.
- Provides practical, evidence-based symptom management strategies tailored to complex and variable disease trajectories.
- Offers multidisciplinary models for coordinated, patient-centered care in rare conditions.
- Explores ethical, legal, and policy frameworks specific to rare disease palliative care.
- Combines clinical guidance with research insights, advocacy perspectives, and system-level recommendations. Who This Book Is For
This book is intended for:
- Palliative care physicians and specialists
- Rare disease clinicians and geneticists
- Nurses and advanced practice providers
- Pediatric and adult complex care teams
- Social workers and case managers
- Psychologists and counselors
- Health policy experts and healthcare administrators
- Researchers in rare diseases and palliative medicine
- Medical educators and postgraduate students
It is particularly valuable for professionals working in tertiary centers, multidisciplinary clinics, home-based care services, and academic institutions.
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