Table 6.

Major problems faced by the patient when dealing with a rare disease.

What are the major problems faced by the patient when dealing with a rare disease?	%
Difficulties experienced at school	60.7
Personal care activities (personal hygiene, dressing/undressing, eating, etc.)	55.2
Social life and relationships	52.4
Motor and sensory functions (vision, hearing, difficulties in body postures, etc.)	47.6
To reach school/work	36.6
Daily activities and tasks (chores, food preparation, shopping, etc.)	34.5
Being able to carry out daily work	23.8
Inability to manage financial situation/budget	18.6
Learning and understanding	16.2
General behavior control	15.9
Difficulties experienced in business life	12.8
Communication with others (participating in a chat, sending e-mail)	7.9