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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 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/
Belgium * RaDiOrg — Rare Diseases Belgium asbl/vzw  +32 478 72 77 03
https://radiorg.be/fr/contact/
Canada Rare Disease Information and Resource Centre 1-888-987-5539
info@rqmo.org
www.rqmo.org/rare-disease-information-and-resource-centre/
China                       Illness Challenge Foundation +86 4000408772
bttz@chinaicf.org
www.chinaicf.org
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