Lignes d’assistance dans le monde

Lignes Téléphoniques d’aide pour les maladies rares dans le monde      
Pays Organisation      Numéro d’appel & autres moyens de contact
Canada Rare Disease Information and Resource Centre +385 12441393  –  info@rqmo.org
www.rqmo.org/rare-disease-information-and-resource-centre/
Croatie  * Croatian Help Line for Rare Diseases +385 12441393  –  rijetke.bolesti@gmail.com
www.rijetke-bolesti.hr/rare-diseases-croatia
Facebook group
Danemark * Rare Diseases Denmark +45 33140010  –  helpline@sjaeldnediagnoser.dk
sjaeldnediagnoser.dk/helpline/
France * Maladies Rares Info Services (MRIS) + 33 156538136  –  info-services@maladiesrares.org
www.maladiesraresinfo.org
Allemagne ACHSE Betroffenen- und Angehörigenberatung +49 3033007080  –  www.achse-online.de
Hongrie * Lifebelt +36 617904533  –  mentoov@rirosz.hu  –  mentoov.rirosz.hu/
Irlande * National Rare Diseases Office (NRDO) +353 1800 24 03 65 or + 353 18545065
rare.diseases@mater.ie  –  www.hse.ie/eng/services
Italie * Università di Padova, Coordinating Centre for Rare Diseases, Veneto Region + 39 049 82 15 700  –  malattierare@pediatria.unipd.it
Italie * Telefono Verde Malattie Rare +39 800896949  – https://www.iss.it/?p=171
Italie * 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
Mexique AcceSalud accesalud@femexer.org
Norvège 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
Roumanie * Romanian National Alliance for Rare Disease (NoRo Help Line) +40 260611214  –  office@apwromania.ro
Roumanie * Romanian Myasthenia Gravis Info Centre +40 744704399  –  asociatia.miastenia@gmail.com
Serbie * NORBS +381 800333103  –  office@norbs.rs  – www.norbs.rs/
Espagne * SIO Feder +34 918221725  –  sio@enfermedades-raras.org
Suisse * Infos Maladies Rares +41 848314372  –  contact@infomaladiesrares.ch
www.info-maladies-rares.ch/
Suisse * Seltene Krankheiten +41 442663535  –  selten@kispi.uzh.ch  –  www.kispi.uzh.ch
USA GARD Genetic and Rare Diseases Information Center +1 8882052311
Monde entier ThinkGenetic https://www.thinkgenetic.com/

medical advice from Genetic counselors :  https://www.thinkgenetic.com/contact-counselor