Improving life journey for children suffering from rare disorders

The partnership signed, 3 years ago, between Fondation Groupama and Hospital Necker for Sick Children aimed to give families the means and necessary autonomy to build a real life journey for their children. The main aims of the project were :

  • To Identify the breaks in the child’s life journey and find answers and actionable levers to improve their quality of life;
  • To Increase awareness of the social issues raised by rare disorders ;
  • To Work out a specific method to promote families’ autonomy.

A group of 50 families with children aged between six months and 18 was thereby established and a portrait of the quality of life for families with a child suffering from a rare disorder was drawn. Based on this portrait, a method and new tools were created by social workers who support families of young patients suffering from rare disorders. Two main tools will help improve those children’s life journey :

  • A standardized conversation chart to harmonize practices and take into consideration the context, widely speaking, (environment, family situation, etc ) of the child’s and family’s life which will help anticipate the potential breaks in social support ;
  • A communication book which allowed the 55 families to coordinate the various healthcare providers caring for the child, identify important documents and become actors in their child’s global care.,.

According to the press release published earlier this year « new challenges will be taken up in 2018 so that the tools conceived and tested during these past three years  do not remain « Necker tools » but become national helps ».

(©orphanews 2018.01.25)