- About EURORDIS
- About Rare Diseases
- Rare Disease Policy
- Orphan Drugs & Treatments
- What is an orphan drug?
- Improve the safety of your medicines
- Compassionate Use
- Role of EURORDIS
- Patient advocates involvement
- Access to orphan drugs
- Health technology assessment
- EURORDIS Round Table of Companies (ERTC)
- List of the latest marketing authorisations and orphan medicinal products designations
- Living with a Rare Disease
- Services & Trainings
- Get involved
- News & Events
Pharmacovigilance: Improve the safety of your medicines
You or your child may be treated with one or several medicines, either taken by prescription or bought over the counter. Your experience with taking these medicines is precious: when shared with other patients, it increases the knowledge we have on these medicines, such as how different people react to the same product. We, patients, are not just passively taking the treatments that doctors prescribe: we have an active role to play to generate more knowledge about these products. We are vigilant when we start taking a new medicine, we want to be informed of its properties, its effects - both positive and negative - and we want this experience to be collected. We want to be pharmaco-vigilant. This document answers some questions on how we can achieve this goal.
Good to know
When you or someone you care for has a disease, there is information that can help you face an unexpected event in relation to your treatment.
Useful to do
This section explains what you can do if you suspect a side effect possibly due to your treatment.
Resources
Useful services: where you can report an adverse event, find out who can assist you, and find reports made by other patients.
Find out the latest news from the rare disease community! 
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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