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- What is an orphan drug?
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- Role of EURORDIS
- Patient advocates involvement
- Access to orphan drugs
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- List of the latest marketing authorisations and orphan medicinal products designations
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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 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 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/ |
| 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 |
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The voice of rare disease patients in Europe
The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiative
Bringing together patients, families and experts to share experiences in a moderated multi-language forum.
The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.
An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiative
Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiative
The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiative
Bringing together patients, families and experts to share experiences in a moderated multi-language forum.
The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.
An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiative
Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiative