Rare disease help lines

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 disease.

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. Available help lines are listed below.

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.

A * in the list below indicates the help line is a Member of the European Network of Rare Disease Help Lines.

Rare disease help lines
Country	Organisation	Help line number & other contact details
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 *	SAIO Helpline UNIAMO FIMR	Toll free number 800 66 2541 Monday, Wednesday, Friday : 10.00-13.00 ; 14:00-17:00 Tuesday, Thursday: ore 10:00-13:00. www.live.malatirari.it online teleconsultation Saio.ascolto@uniamo.org Saio.informa@uniamo.org Saio.orienta@uniamo.org email contacts for psychological support,information and orientation
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