According to this survey, rare disorders have a major impact on the daily living of over 80% of patients and their families. Juggling daily care and its coordination represents a real burden for patients and their families. That is :
- 42% of respondents spend more than 2 hours a day on a patient’s necessary care ;
- 62% of respondents spend more than 2 hours a day on tasks linked to the disorder, whilst almost one third spend more than 2 hours a day for a patient’s necessary care ;
- At least 64% of the carers are women ;
- 38% of respondents could not go to work because of health issues lasting more than 30 working days over the previous 12 months;
- 41% of patients and carers needed a special leave but could not get it..
The survey also covers the daily impact of rare disorder, especially mental health, employment or financial impacts.