Rare diseases (RDs) are serious, often chronic, progressive, degenerative and associated
with comorbidities, substantially affecting quality of life. Integrated care is essential to ensure …

Abstract Background Rare diseases (RDs) are often complex, serious, chronic and multi-
systemic conditions, associated with physical, sensory and intellectual disability. Patients …

Bridging the gaps between health and social care for rare diseases is not only necessary but
crucial to increase the life expectancy, quality of life and autonomy of people living with a …

Abstract Background In the European Union, a disease is defined as rare when it affects
fewer than 1 in 2000 people. Currently, there are up to 8000 described rare diseases (RDs) …

Rare diseases affect over 300 million people worldwide and are gaining recognition as a
global health priority. Their inclusion in the UN Sustainable Development Goals, the UN …

In many European Union (EU) Member States (MS), rare disease (RD) patients are subject
to marginalisation in classic healthcare systems designed for non-rare diseases. As a result …

Objective: By definition a rare disease affects fewer than 1 in 2,000 people but collectively 1
in 17 people are affected at some time in their lives. Rare disease patients often describe …

Background According to rough estimates, there are approximately 150,000 rare disease
patients in Slovenia (out of a total population of 2 million). Despite the absence of accurate …

Integrated service delivery systems have been proposed as a way to improve the efficacy
and efficiency of health-care systems, particularly for patients with multiple needs and …

Background Calls have been made for governments to adopt a cohesive approach to rare
diseases through the development of national plans. At present, Australia does not have a …