Also physicians, scientists and political decision-makers had long been unaware of rare diseases, there was no comprehensive research or health policy on these issues until recently. For most rare diseases, there is no treatment that cures the disease completely, but treatment and medical care can improve patients' quality of life and extend their life expectancy. Striking advances in some diseases show that further efforts should be made in the areas of research and social solidarity.
Almost all patients; besides the prolongeddiagnostic process due to the rarity of the disease, they also face difficulties in referring to knowledgeable and experienced specialists. Problems with access to quality health care, social and medical support, effective communication between hospitals and general practices are experienced.
Patients affected by rare diseases are also weaker in psychological, social, economic and cultural terms. These challenges can be overcome by appropriate policies.