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 helplines offer social, psychological and information solutions to all of these needs.
EURORDIS promotes, networks, trains and advocates on behalf of rare disease helplines. In order to create a service that provides quality information and support, patient organisations need guidance and assistance. The European Network of Rare Diseases (ENRD) Helplines provides this guidance.
Contact the helpline in your country listed below to find out more information about therapeutic recreation, respite care and adapted housing.
If a helpline for your country is not provided, please reach out to a patient organisation in your country for assistance.
List of ENRD helplines
Country | Organisation | Helpline number & other contact details |
Austria | Pro Rare Austria | +43 664 280 37 67 office@prorare−austria.org https://www.prorare-austria.org/kontakte/kontaktaufnahme-betroffene |
Belgium | RaDiOrg – Rare Diseases Belgium asbl/vzw | +32 478 72 77 03 https://radiorg.be/fr/contact/ |
Croatia | Croatian Helpline 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 |
Hungary | Lifebelt |
+36 617904533 mentoov@rirosz.hu mentoov.rirosz.hu/ |
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 |
Portugal | Linha Rara |
+351 300505700 info@rarissimas.pt |
Romania | Romanian National Alliance for Rare Disease (NoRo Helpline) |
+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 |
Germany | ACHSE-Beratung für Betroffene und Angehörige | 030-3300708-12 030-3300708-27 beratung@achse-online.de https://www.achse-online.de/de/ |