1. Results of a survey on the role of Patient Groups in Research and their priorities for the future Florence Paterson Centre de sociologie de l’innovation, UMR CNRS 7185 - Mines-ParisTech Paris, France

14. Areas of research funded 81 % Basic research 57% Therapeutics 56% Diagnosis 46% Human and Social Science 19% Research infrastructures 54% Epidemiology / Natural history of the disease 24% Assistance technologies / Daily life

15. Types of financial support (37% of the Pos) 47% Financing a fellowship for a young researcher 54% Financing the acquisition of a specific research equipment (centrifuge, computer, etc) 77% Initiating and financing a specific research project 75% Co-financing the operating budget of a specific research project 39% Co-financing meetings of researchers / clinicians 30% Co-financing training of researchers / clinicians

16. Financial support to research is linked to the POs’ budgets and age POs’ annual total budget % of POs funding research Budget > 300.000 € 81% Budget between 30.000 to 300.000 € 50% - 56% Budget between 5000 to 30.000 € 32% - 33% Budget < 5000 € 11% -14% Date of creation % of POs funding research Before 1970 70% Between 1970 - 1979 61% Between 1980-1989 47% Between 1990 -1999 35% Between 2000-2009 30%

18. POs’ experience of collaboration with the research community

19. POs’ experience of collaboration with researchers

20. Priorities and obstacles to the development of research

22. Degree of priority that should be given when allocating public funds & research areas

23. Obstacles to the advance of research