Useful to do

This section explains what you can do if you suspect a possible side effect from your treatment. This will help your own health, and the information you share with others on what happened to you  will also help other patients.


What should I do first if I suspect an adverse drug effect?

Always try to contact your doctor, or another healthcare professional.


Can I report a side effect and not discuss it with my doctor?

It is recommended you always talk to your doctor; however there are some reasons why you may hesitate to discuss the drug reaction with your doctor

The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect 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.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day 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 initiativeEuropean Conference on Rare Diseases