EURORDIS-Rare Barometer Voices

EURORDIS-Rare Barometer Voices (24.10.2018)

Results of the survey on sufferers’ participation in research

 3213 patients answered, from 42 different countries

It is mentioned that no treatment is available for the great majority of disorders or few are accessible.

For research respondants, the 3 main obstacles for research are :

  • Lack of funding, essentially public
  • Lack of private funding…..also
  • Low number of patients

For patients, the 3 priorities are :

  • Developing therapies
  • Improving diagnosis
  • Identifying the causes and mechanisms of the disorder

1/3 of patients have already taken part in research projects such as:

  • Development of treatments and therapies
  • Quality of life
  • Development of gene therapies

The most important factors for patient participation are:

  • Helping science and other disorders
  • Receiving clear information on the research project
  • Having a good relationship with researchers