People living with a rare disease are frequently faced with a critical lack of information and support. Upon hearing their diagnosis, their first point of contact is often the local patient organisation for their diseases. If a patient organisation does not exist in their area or cannot supply the correct, validated information, the patient is left feeling isolated.
Rare disease help lines offer social, psychological and information solutions to all of these needs.
Contact the help line in your country listed below to find out more information about therapeutic recreation, respite care and adapted housing.
A * in the list below indicates the help line is a Member of the European Network of Rare Disease Help Lines.
EURORDIS promotes, networks, trains and advocates on behalf of rare disease help lines. In order to create a service that provides quality information and support, patient organisations need guidance and assistance. The European Network of Rare Diseases Help Lines provides this guidance.
Click to show list of help lines
Country | Organisation | Help line number & other contact details |
Belgium | Ligne téléphonique « Maladies Rares » | 0800 9 28 02 https://rd-b.be/ |
Canada | Rare Disease Information and Resource Centre |
1-888-987-5539 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 * | AFM-Téléthon (neuro-muscular diseases only) |
+33 0800353637 www.afm-telethon.fr/services-aux-familles-malades |
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/ |
Iceland | Einstok börn |
+354 568 2661 einstokborn@einstokborn.is www.einstokborn.is |
India | OrdIndia.org | +91 8892 555 000 |
Ireland * | National Rare Diseases Office (NRDO) |
+ 353 18545065 rare.diseases@mater.ie www.hse.ie/eng/services |
Italy * | Rare Diseases Coordinating Centre, Veneto region |
+ 39 800 318811 + 39 (0) 49 82 15 700 malattierare@regione.veneto.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 |