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Links to help lines: I find it complex to report an adverse drug effect. Can anyone help?
To start with, you can ask your pharmacist or a nurse. Some patient organisations working with pharmacovigilance authorities can also explain how to best complete the report.
The European Network of Rare Diseases Help Lines is also trained to respond to any question you may have in this respect. They can even fill in the form for you, by asking you the relevant questions when you call them. This will ensure highest reporting quality by making sure all questions are answered.
Not all Member States have a national help line for rare diseases; however for the following Member States you can contact:
Belgium
RadioOrg: info@radiorg.be
Bulgaria
Information Centre for Rare Diseases and Orphan Drugs: 00 359 32 57 57 97
Croatia
Hrvatska Linija Pomoci za Rijetke Bolesti: 08009966
France
Maladies Rares Info Services: 01 56 53 81 36 - www.maladiesraresinfo.org
AFM-Téléthon: 0810 811 088
Italy
Telefono Verde Malattie Rare: 800 89 69 49
Coordinating Centre Rare Diseases Veneto Region: 00 39 049 82 15 700
Portugal
Linha Rara: 707 100 200
Romania
NORO Help Line: 40 360 103200
Myasthenia Gravis Romania: 0744704399
Spain
SIO-Feder: 918 22 17 25
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The voice of rare disease patients in Europe
The international voice of people living with rare diseases
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
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