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Rare disease helplines

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
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
GermanyACHSE-Beratung für Betroffene und Angehörige030-3300708-12
030-3300708-27
beratung@achse-online.de
https://www.achse-online.de/de/