Země
Organizace
Dle e-mailu
Dle telefonu
Austrálie
Genetic Alliance Australia:
https://www.geneticalliance.org.au/
Rare Voices Australia:
https://rarevoices.org.au/
https://www.geneticalliance.org.au/
Rare Voices Australia:
https://rarevoices.org.au/
+61 2 9295 8359
+61 (0)499 549 629
+61 (0)499 549 629
Belgie
RaDiOrg is the umbrella organisation for patient organisations concerning rare diseases.
https://www.radiorg.be/nl/contact/
https://www.radiorg.be/nl/contact/
+32 (0)478 72 77 03
Bulgaria
ICRDOD
(Information Center for Rare Diseases and Orphan
Drugs): www.raredis.org
+359
(0)32 57
57 97
Kanada
CORD (Canadian
Organization for Rare Disorders): www.raredisorders.ca
+1-877
302
7273 (English speakers)
Kanada
RQMO (Regroupement
Québécois des Maladies Orphelines - Portail Info Maladies Rares Québec):
www.rqmo.org
www.rqmo.org
+1-855
543 0550 (French speakers)
Německo
ACHSE (Allianz
Chronischer Seltener Erkrankungen): www.achse-online.de
0049 (0) 30 3300708 21/-22
Korea
National Institute of Health rare incurable diseases center:
http://helpline.nih.go.kr/cdchelp/index.gst
http://helpline.nih.go.kr/cdchelp/index.gst
043)719-8686, 8688
Francie
Maladies Rares
Info Services:
www.maladiesraresinfo.org
www.maladiesraresinfo.org
From
France:
Numéro vert 0800 40 40 43
From abroad:
+33 156 538 136
Numéro vert 0800 40 40 43
From abroad:
+33 156 538 136
Irsko
Organization: National Rare Diseases Office Information Services:
www.rarediseases.ie
www.rarediseases.ie
By phone: +353 1 854 5065
+353 1 878 5065 from abroad
+353 1 878 5065 from abroad
Italy
Istituto
Superiore di Sanità: Centro Nazionale Malattie
Rare: www.iss.it/cnmr/
+39
800 89 69
49
Latinská Amerika
GEISER (Grupo de Enlace, Investigacion y Soporte Enfermedades Raras)
(+54) (0261) 4291987
o 0800 333 3353
de Lunes a Viernes de 08:00 hs a 12:30 hs
o 0800 333 3353
de Lunes a Viernes de 08:00 hs a 12:30 hs
Norsko
NKSD – National Advisory Unit on Rare Disorders
NKSD - Nasjonal kompetansetjeneste for sjeldne diagnoser)
www.sjeldne-diagnoser.no/
NKSD - Nasjonal kompetansetjeneste for sjeldne diagnoser)
www.sjeldne-diagnoser.no/
+47
800 41710
Rumunsko
Centrul de
informare pentru Boli
Genetice Rare: www.apwromania.ro/index.php?act=cibgr
080
080 1111
Španělsko
Centro de Investigación Biomédica en Red de Enfermedades Raras (CIBERER)
Španělsko
Servicio de Información y Orientación de FEDER
+34 918 221 725
Švédsko
Švédské informační centrum pro vzácná onemocnění:
https://www.agrenska.se/Sallsynta-diagnoser/informationscentrum-for-sallsynta-halsotillstand-vid-Agrenska/
https://www.agrenska.se/Sallsynta-diagnoser/informationscentrum-for-sallsynta-halsotillstand-vid-Agrenska/
031- 750 92 00
Švýcarsko
+41 (0)848 314 372 (from Monday to Thursday – Open 9 am to 12 am and 2pm to 4pm)
Švýcarsko
+41 (0)44 266 35 35 (Tuesday 9 – 11 am and Thursday 14-16 pm)
Švýcarsko
Helpline für Betroffene und Angehörige - Netzwerk Rare Diseases Nordwest und Zentralschweiz:
https://www.ukbb.ch/de/Rare-Diseases.php
https://www.ukbb.ch/de/Rare-Diseases.php
Contact form:
https://www.ukbb.ch/de/konaktformular-rare-diseases.php
https://www.ukbb.ch/de/konaktformular-rare-diseases.php
+41 61 704 10 40 (Monday to Friday, 9 AM - 12 AM and 2 PM - 5 PM)
Taiwan
Taiwan
Foundation for Rare Disorders:
www.tfrd.org.tw/english/
www.tfrd.org.tw/english/
Contact
form:
www.tfrd.org.tw/english/contact/index.php
www.tfrd.org.tw/english/contact/index.php
Velká Británie
CLIMB (Metabolic Diseases, UK)
(+44) (0)800 652 3181
(Open 10am - 4pm GMT)
(Open 10am - 4pm GMT)
USA
Genetic and
Rare Diseases Information Center (GARD):
www.rarediseases.info.nih.gov/GARD/ Default.aspx
www.rarediseases.info.nih.gov/GARD/ Default.aspx
Contact form:
www.rarediseases.info.nih.gov/GARD/ EmailForm.aspx
www.rarediseases.info.nih.gov/GARD/ EmailForm.aspx
Monday
-
Friday, 12:00 p.m. to 4:00 p.m. Eastern Time
(888) 205-2311 (Phone)
(888) 205-3223 (TTY)
(301) 251-4925 (International Telephone Access Number)
(888) 205-3223 (TTY)
(301) 251-4925 (International Telephone Access Number)