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 …

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

Rare diseases are a threat to the health of EU citizens, in so far as they are life-threatening
or chronically debilitating diseases with a low prevalence and a high level of complexity …

Despite general advancements in population health indicators and universal health
coverage, people living with rare diseases and their families still experience considerable …

Rare disease patients experience particular obstacles in accessing high quality healthcare.
These obstacles include but are not limited to:(i) lack of scientific knowledge of their …

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 …

Since developments are global in the healthcare arena, more should be done to align EU
and other big markets' regulatory practices for rare disease patients. Notwithstanding efforts …

Since 1999 the european commission has gradually developed a proactive approach
towards rare diseases (rD). Despite the progress made over the last years, a comprehensive …

Abstract Background/Aims: National Plans for Rare Diseases (RDs) are the common
denominator of current public health policy concerns on RDs across the EU. With the aim of …

Background Approximately 4 million patients with a rare disease live in Germany. The
medical care of these patients is problematic because of the rarity and heterogeneity of …