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ELF attends EMA patients training session and patient organisation meeting

Last Update 06/04/2021

ELF attended an interactive training day and patient organisation meeting at the European Medicines Agency to learn about how and when patients can take part in their activities.


ELF attended an interactive training day at the European Medicines Agency (EMA) on 25 November to learn about how and when patients can take part in EMA activities throughout the lifecycle of a medicine. 

The EMA is a decentralised agency of the EU, located in London. It is responsible for the scientific evaluation of medicines developed by pharmaceutical companies for use in the EU.

The training provided information and hands-on experience about how medicines are evaluated at the EMA and how patients are involved both in the processes leading up to authorisation of a medicine as well as in the marketing of it once it has been authorised. 

The involvement of patients is key, adding a ‘real-life’ perspective to scientific discussions and their involvement includes: 

  • participation in EMA Scientific Advisory Group meetings with companies looking to authorise a new medicine
  • responding to written consultations which include risk and safety issues
  • reviewing documents relating to the medicine to ensure information is clear and appropriate

We nominated a representative from Stowarzyszenie Walki z Rakiem Płuca, a lung cancer patient organisation in Poland, to attend with us and they said:

I found the training very useful. The knowledge will give us the ability to discuss with other stakeholders with much more confidence and will enable us to influence the procedure of drug implementation in the parts that can be influenced by patients.” 

EMA Working Party with Patients’ and Consumers’ Organisations (PCWP) meeting

Following the training day, ELF attended the annual EMA Human Scientific Committees’ Working Party with Patients’ and Consumers’ Organisations (PCWP) meeting on 26 November in London. The meeting saw representatives from 28 patient and consumer European organisations come together with EMA staff to discuss their involvement in EMA activities. 

The meeting included an overview of patient involvement in the EMA, which, during 2015, had seen an increase in patient organisation representatives in their activities and a greater number of patient speakers at workshops and conferences.  

Several presentations were given including one by Kerstin from ELF about the European Patient Ambassador Programme (EPAP) which generated interest and questions from attendees.

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