Table 2.
Number of inquiries per helpline by phone, through a helpline from a health care professional, or through a patients’ organization.
| Name of helpline | Total number of inquiries, n | Number of respondents, n | Phone, n (%) | Helpline, n (%) | Patients’ organization (%) |
| AFM Téléthona | 254 | 16 | 120 (47.2) | 39 (15.4) | 79 (31.1) |
| CVRRb | 294 | 6 | 227 (77.2) | 222 (75.5) | 19 (6.5) |
| Croatian Help Line | 15 | 3 | 9 (60.0) | 0 (0.0) | 3 (20.0) |
| ENERCAc | 3 | 2 | 0 (0.0) | 0 (0.0) | 1 (33.3) |
| ICRDODd | 17 | 2 | 11 (64.7) | 2 (11.8) | 4 (23.5) |
| Linha Rara | 196 | 3 | 62 (31.6) | 6 (5.6) | 8 (7.4) |
| MRISe | 389 | 4 | 262 (67.4) | 8 (2.1) | 15 (3.9) |
| Myasthenia Gravis MGR | 28 | 2 | 10 (35.7) | 3 (10.7) | 15 (53.6) |
| NOROfHelp Line | 90 | 1 | 30 (33.3) | 1 (1.1) | 21 (23.3) |
| SIO-FEDERg | 203 | 6 | 74 (36.5) | 0 (0.0) | 0 (0.0) |
| TVMRh | 170 | 3 | 169 (99.4) | 2 (1.2) | 0 (0.0) |
| VISOi | 17 | 3 | 14 (82.4) | 1 (5.9) | 7 (41.2) |
| Total | 1676 | 51 | 988 (58.9) | 284 (24.3) | 172 (14.7) |
aAssociation Française contre les Myopathies-Téléthon
bCoordinating Centre Veneto Region
cEuropean Network for Rare Congenital Anaemia
dInformation Centre for Rare Diseases and Orphan Drugs
eMaladies Rares Info Services
fNorwegian-Romanian Information Centre
gInformation and Orientation Service of the Spanish Federation of Rare Diseases
hTelefono Verde Malattie Rare
iNational Organization for Knowledge and Specialist Consultancy, Denmark