Orphanet: Serviços de informação baseados na Internet
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País
Organização
Por email
Por telefone
Alemanha
ACHSE (Allianz Chronischer Seltener Erkrankungen): www.achse-online.de
0049 (0) 30 3300708 21/-22
América Latina
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
Austrália
The Association of Genetic Support of Australasia:
www.agsa-geneticsupport.org.au/
+61 2 9211 1462
Áustria
Forum Seltene Krankheiten
http://www.forum-sk.at/
+43 (0)512 9003 70532
Belgio
RaDiOrg is the umbrella organisation for patient organisations concerning rare diseases. http://radiorgnl.squarespace.com/ http://radiorgfr.squarespace.com/
+32 478 727 703
Bulgária
ICRDOD (Information Center for Rare Diseases and Orphan Drugs): www.raredis.org
+359 (0)32 57 57 97
Canadá
CORD (Canadian Organization for Rare Disorders): www.raredisorders.ca
+1-877 302 7273 (English speakers)
Canadá
RQMO (Regroupement Québécois des Maladies Orphelines - Portail Info Maladies Rares Québec):
www.rqmo.org
+1-855 543 0550 (French speakers)
Coreia
National Institute of Health rare incurable diseases center: http://helpline.nih.go.kr/cdchelp/index.gst
043)719-8686, 8688
Dinamarca
Team Sjældne Handicap: https://socialstyrelsen.dk/handicap/sjaeldne-handicap
+45 72 42 40 47
Espanha
Centro de Investigación Biomédica en Red de Enfermedades Raras (CIBERER)
Espanha
Servicio de Información y Orientación de FEDER
+34 918 221 725
EUA
NORD (National Organization for Rare Disorders): www.rarediseases.org
+1 (800) 999 6673
EUA
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)
Finlândia
Harvinaiset-verkosto: www.harvinaiset.fi/english
França
Maladies Rares Info Services: www.maladiesraresinfo.org
From France: 01 56 53 81 36 From abroad: +33 156 538 136
Holanda
Erfocentrum (http://www.erfelijkheid.nl)
033-3032110
Irlanda
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
Itália
Istituto Superiore di Sanità: Centro Nazionale Malattie Rare: www.iss.it/cnmr/
+39 800 89 69 49
Noruega
NKSD – National Advisory Unit on Rare Disorders NKSD - Nasjonal kompetansetjeneste for sjeldne diagnoser) > www.sjeldne-diagnoser.no/
+47 800 41710
Portugal
Linha Rara: http://www.linharara.pt/index.php
707 100 200
Reino Unido
Contact-a-family : www.cafamily.org.uk
0 808 808 3555
Reino Unido
CLIMB (Metabolic Diseases, UK)
(+44) (0)800 652 3181 (Open 10am - 4pm GMT)
Roménia
Centrul de informare pentru Boli Genetice Rare: www.apwromania.ro/index.php?act=cibgr
080 080 1111
Suécia
The Swedish Information Centre for Rare Diseases: www.socialstyrelsen.se/en/rarediseases
+46-(0)31-786 5590
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)
Taiwan
Taiwan Foundation for Rare Disorders: www.tfrd.org.tw/english/
Contact form: www.tfrd.org.tw/english/contact/index.php