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% |
| www.weesziekten.be/ www.maladiesrares.be | 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% |
PED Pediatrician, SP adult Specialists treating adults (endocrinologists and neurologists), SP child Specialists treating children (pediatric endocrinologists and neurologists)