Rare disease help lines

Rare disease help lines offer social, psychological and information solutions to people living with a rare disease.

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

TELEPHONE.jpgcontact 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

Croatia *                      

Croatian Help Line for Rare Diseases

+385 12441393
rijetke.bolesti@gmail.com
www.rijetke-bolesti.hr/rare-diseases-croatia
Facebook group
Denmark *

Rare Disorders 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/
Ireland *

National Rare Diseases Office (NRDO)

+353 1800 24 03 65 or 
+ 353 18545065
rare.diseases@mater.ie
www.hse.ie/eng/services
Italy *

Università di Padova, Coordinating Centre for Rare Diseases, Veneto Region

+ 39 049 82 15 700
malattierare@pediatria.unipd.it
Italy *

Telefono Verde Malattie Rare

+39 800896949
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 National Information Centre

+40 744704399
+40 743470122
asociatia.miastenia@gmail.com
miastenie.ro/helpline-info-mg-ro/
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

 

 

 

 

 

Page created: 13/09/2018
Page last updated: 13/09/2018
 
 
La voix des patients atteints de maladies rares en EuropeEURORDIS Donnant la voix, à l'international, aux personnes vivant avec une maladie rare, Rare Diseases International est une initiative d'EURORDISRare Disease International Pour rapprocher patients, familles et experts sur un forum modéré multilingue, où partager leurs expériences. RareConnect Le programme Rare Barometer est une initiative d’EURORDIS qui vise à réaliser des sondages pour transformer les expériences des patients de maladie rare en faits et chiffres à communiquer aux décideurs politiques.Rare Barometer Campagne internationale de sensibilisation organisée chaque année le dernier jour de février, la Journée Internationale des Maladies Rares est une initiative d'EURORDISRare Disease Day Participez au plus grand événement réunissant tous les acteurs des maladies rares en Europe lors de Conférence européenne bisannuelle sur les maladies rares et les médicaments orphelins (European Conference on Rare Diseases and Orphan Products, ou ECRD). L'ECRD est une initiative d'EURORDISEuropean Conference on Rare Diseases