This is a survey carried out for the ‘Fondation Groupama’. Its aim is to understand and analyse the French people’s gaze on people suffering from rare disorders. The results are very interesting.:
- 82% think people suffering from rare disorders face difficulties in their life at work or at school ;
- 81% consider that patients may also face difficulties in their daily life (accommodation, transports, sports,….).;
- 78% consider that patients do not automatically get an allowance ;
- 74% think that the expenses linked to the disorder are not all reimbursed ;
- 43% think that one of the parents must stop working when a child has a rare disorder ;
- 88% think that a child suffering from a rare disorder can go to school
But sometimes they underestimate the difficulties: 83% think patients can lead a normal social and relationship life and 78% that they can have children.
Lastly, for French people, efforts must be made to ease the life of patients suffering from rare disorders. They identify the two main priorities for action:
- Supporting the families of people suffering from rare disorders (61%) ;
- Improving the economic support for patients (59%).
Half of the respondents (54%) also consider that the main priority for children with a rare condition is to go to school and half of the respondents think new technologies must be developed to ease the daily life of people suffering from rare disorders. (©orphanews 2018.03.28)