Rare disease help lines
|
Country
|
Organisation
|
Help line number & other contact details
|
Canada
|
Rare Disease Information and Resource Centre
|
1-888-987-5539
info@rqmo.org
www.rqmo.org/rare-disease-information-and-resource-centre/ |
Croatia *
|
Croatian Help Line for Rare Diseases
|
+385 12441393
rijetke.bolesti@gmail.com
www.rijetke-bolesti.hr/rare-diseases-croatia
Facebook group |
Czech Republic
|
Rare Diseases Czech Republic
|
+420 774 151 290
help@vzacna-onemocneni.cz |
Denmark * |
Rare Diseases Denmark
|
+45 33140010
helpline@sjaeldnediagnoser.dk
sjaeldnediagnoser.dk/helpline/ |
France * |
AFM-Téléthon (neuro-muscular diseases only)
|
+33 0800353637
www.afm-telethon.fr/services-aux-familles-malades |
France * |
Maladies Rares Info Services (MRIS)
|
+ 33 156538136
info-services@maladiesrares.org
www.maladiesraresinfo.org |
Germany |
ACHSE Betroffenen- und Angehörigenberatung
|
+49 3033007080
www.achse-online.de |
Hungary * |
Lifebelt
|
+36 617904533
mentoov@rirosz.hu
mentoov.rirosz.hu/ |
Iceland |
Einstok börn
|
+354 568 2661
einstokborn@einstokborn.is
www.einstokborn.is |
India |
OrdIndia.org
|
+91 8892 555 000 |
Ireland * |
National Rare Diseases Office (NRDO)
|
+ 353 18545065
rare.diseases@mater.ie
www.hse.ie/eng/services |
Italy * |
SAIO Helpline UNIAMO FIMR
|
Toll free number 800 66 2541
Monday, Wednesday, Friday : 10.00-13.00 ; 14:00-17:00
Tuesday, Thursday: ore 10:00-13:00.
www.live.malatirari.it online teleconsultation
Saio.ascolto@uniamo.org
Saio.informa@uniamo.org
Saio.orienta@uniamo.org
email contacts for psychological support,information and orientation |
Italy * |
Rare Diseases Coordinating Centre, Veneto region
|
+ 39 800 318811
+ 39 (0) 49 82 15 700
malattierare@regione.veneto.it |
Italy * |
Telefono Verde Malattie Rare
|
+39 800896949
https://www.iss.it/?p=171 |
Italy * |
Centro di ascolto malattie rare
|
+39 800 880101
http://www.regione.toscana.it/-/centro-di-ascolto-per-le-malattie-rare |
Italy * |
Centro di ascolto per le malattie rare del Piemonte e della Valle d’Aosta
|
+39346.1059486
+39339.5203554
segreteria@a-rare.it |
Luxembourg |
Infoline Maladies Rares Luxembourg
|
+352 2021 2022
infolineMR@alan.lu
https://www.alan.lu/infoline |
Mexico |
AcceSalud
|
accesalud@femexer.org |
Norway |
Norwegian National Advisory Unit on Rare Disorders Oslo University Hospital
|
+47 23 02 69 75
liegen@ous-hf.no
Helsenorge.no/Sjeldnediagnoser |
Portugal * |
Linha Rara
|
+351 300505700
info@rarissimas.pt |
Romania * |
Romanian National Alliance for Rare Disease (NoRo Help Line)
|
+40 260611214
office@apwromania.ro |
Romania * |
Romanian Myasthenia Gravis Info Centre
|
+40 744704399
asociatia.miastenia@gmail.com |
Serbia * |
NORBS
|
+381 800333103
office@norbs.rs
www.norbs.rs/ |
Spain * |
SIO Feder
|
+34 918221725
sio@enfermedades-raras.org |
Switzerland * |
Infos Maladies Rares
|
+41 848314372
contact@infomaladiesrares.ch
www.info-maladies-rares.ch/ |
Switzerland * |
Seltene Krankheiten
|
+41 442663535
selten@kispi.uzh.ch
www.kispi.uzh.ch |
USA |
GARD Genetic and Rare Diseases Information Center
|
+1 8882052311 |