Orphanet: Hulplijnen voor persoonlijke vragen
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Land
Organisatie
E-mailadres
Telefoonnummer
Australië
The Association of Genetic Support of Australasia: www.agsa-geneticsupport.org.au/
+61 2 9211 1462
België
RaDiOrg is the umbrella organisation for patient organisations concerning rare diseases.
https://www.radiorg.be/nl/
https://www.radiorg.be/fr/
+32 (0)478 72 77 03 [NL]
+32 (0)473 54 18 66 [FR]
Bulgarije
ICRDOD (Information Center for Rare Diseases and Orphan Drugs): www.raredis.org
+359 (0)32 57 57 97
Canada
CORD (Canadian Organization for Rare Disorders): www.raredisorders.ca
+1-877 302 7273 (English speakers)
Canada
RQMO (Regroupement Québécois des Maladies Orphelines - Portail Info Maladies Rares Québec):
www.rqmo.org
+1-819-943-2854 (French speakers)
Denemarken
Team Sjćldne Handicap: https://socialstyrelsen.dk/handicap/sjaeldne-handicap
+45 72 42 40 47
Duitsland
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
043)719-8686, 8688
Finland
Harvinaiset-verkosto: www.harvinaiset.fi/english
Frankrijk
Maladies Rares Info Services: www.maladiesraresinfo.org
contact form
From France: Numéro vert 0800 40 40 43
From abroad: +33 156 538 136
Ierland
Organization: National Rare Diseases Office Information Line: www.rarediseases.ie
By phone: 1 800 24 0 365 in Ireland +353 1 878 5065 from abroad
Italië
Istituto Superiore di Sanitŕ: Centro Nazionale Malattie Rare: www.iss.it/cnmr/
+39 800 89 69 49
Latijns-Amerika
GEISER (Grupo de Enlace, Investigacion y Soporte Enfermedades Raras)
Contact form
(+54) (0261) 4291987 o 0800 333 3353
de Lunes a Viernes de 08:00 hs a 12:30 hs
Netherlands
Erfocentrum (http://www.erfelijkheid.nl)
033-3032110
Noorwegen
NKSD – National Advisory Unit on Rare Disorders NKSD - Nasjonal kompetansetjeneste for sjeldne diagnoser) www.sjeldne-diagnoser.no/
+47 800 41710
Oostenrijk
Forum Seltene Krankheiten
http://www.forum-sk.at/
+43 (0)512 9003 70532
Portugal
Linha Rara: https://www.linharara.eu/
300 505 700
Roemenië
Centrul de informare pentru Boli Genetice Rare: www.apwromania.ro/index.php?act=cibgr
080 080 1111
Spanje
Centro de Investigación Biomédica en Red de Enfermedades Raras (CIBERER)
Spanje
Servicio de Información y Orientación de FEDER
+34 918 221 725
Switzerland
Helpline Info Maladies rares: http://www.info-maladies-rares.ch/
+41 (0)848 314 372 (from Monday to Thursday – Open 9 am to 12 am and 2pm to 4pm)
Switzerland
Helpline Seltene Krankheiten:
http://www.kispi.uzh.ch/helpline-selten
+41 (0)44 266 35 35 (Tuesday 9 – 11 am and Thursday 14-16 pm)
Switzerland
Helpline für Betroffene und Angehörige - Netzwerk Rare Diseases Nordwest und Zentralschweiz:
https://www.ukbb.ch/de/Rare-Diseases.php
Contact form:
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)
Zweden
The Swedish Information Centre for Rare Diseases: https://www.agrenska.se/Sallsynta-diagnoser/informationscentrum-for-sallsynta-halsotillstand-vid-Agrenska/
031- 750 92 00
Taiwan
Taiwan Foundation for Rare Disorders: www.tfrd.org.tw/english/
Contact form:
www.tfrd.org.tw/english/contact/index.php
Verenigd Koninkrijk
Contact-a-family : www.cafamily.org.uk
0808 808 3555
Verenigd Koninkrijk
CLIMB (Metabolic Diseases, UK)
(+44) (0)800 652 3181
(Open 10am - 4pm GMT)
Verenigde Staten van Amerika
NORD (National Organization for Rare Disorders): www.rarediseases.org
+1(800) 999 6673
Verenigde Staten van Amerika
Genetic and Rare Diseases Information Center (GARD): www.rarediseases.info.nih.gov/GARD/ Default.aspx
Contact form:
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)