6th CUTIS LAXA DAYS
SAVE THE DATES
The 6th Cutis Laxa Days will be held at the University Hospital of Ghent( Belgium)
on 14th, 15th and 16th September 2022
WHAT IS AN ERN (European Reference Network) ? (Videos)
Set up 3 years ago by the European Commission, they aim to help patients with rare disorders receive a right diagnosis and follow-up, gather together all European experts and Patients Organisations to allow patients to get the best care.
The European Commission, Patients and ERN Coordinators give their point of view
European Commission (in almost all European Languages)
https://audiovisual.ec.europa.eu/en/video/I-193046
Patients (in English and/or with English subtitles)
https://audiovisual.ec.europa.eu/en/video/I-191813
ERN Coordinators (in English and/or with English subtitles)
Helplines for Rare Disorders worldwide
| Helplines for rare disorders worldwide |
||
| Country | Organisation | Helpline & other modes of contact |
| Canada | Rare Disease Information and Resource Centre | +385 12441393 – 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 |
| Denmark * | 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 |
| Germany | ACHSE Betroffenen- und Angehörigenberatung | +49 3033007080 – www.achse-online.de |
| Hungary * | Lifebelt | +36 617904533 – mentoov@rirosz.hu – mentoov.rirosz.hu/ |
| Ireland * | National Rare Diseases Office (NRDO) | +353 1800 24 03 65 or + 353 18545065 rare.diseases@mater.ie – www.hse.ie/eng/services |
| Italy * | Università di Padova, Coordinating Centre for Rare Diseases, Veneto Region | + 39 049 82 15 700 – malattierare@pediatria.unipd.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 |
| 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 |
| Wolrdwide | ThinkGenetic | https://www.thinkgenetic.com/
medical advice from Genetic counselors : https://www.thinkgenetic.com/contact-counselor |