Table 2 Results for the question: ‘Which of the listed organizations, search engines and information sources about rare disease do you know?’
Source of information | GP | PED | SP adult | SP child |
|---|---|---|---|---|
n = 110 | n = 93 | n = 48 | n = 27 | |
RaDiOrg | 1% | 5% | 8% | 19% |
RDB | 1% | 5% | 8% | 15% |
EURORDIS | 0% | 9% | 10% | 26% |
Orphanet | 22% | 85% | 75% | 89% |
Global Genes | 1% | 8% | 4% | 11% |
FindZebra | 1% | 1% | 8% | 7% |
5% | 8% | 15% | 11% | |
NORD | 0% | 9% | 8% | 4% |
ICORD | 0% | 2% | 6% | 7% |
Orphanet Journal of Rare Diseases | 2% | 37% | 33% | 78% |
None of the above | 73% | 14% | 19% | 7% |