On September 6th 2018, four European patient organisations (European Patients’ Forum (EPF), European AIDS Treatment Group (EATG), EURORDIS-Rare Diseases Europe and Alzheimer Europe and a research foundation (Fondation Sant Joan de Déu) organised a webinar on patient engagement on medicines research and development. The webinar was attended by more than 100 interested people, many of them patient representatives.

The webinar highlighted the important shift in the way patients are perceived, the great value of engaging them in the development of medicines and the diversity of methods and ways in which such engagement could happen.  All presentations tapped into the topic of capacity building activities (e.g. training and education), which could empower patients to meaningfully engage in the process of developing medicines. More specifically, EURORDIS-Rare Diseases Europe presented the work they have been carrying out, illustrating the different possibilities for the patient community to engage with regulators, while HTA.EATG showcased the engagement with industry through the European Community Advisory Board example.

The webinar also highlighted the need to consider and address the preferences and needs of patients who may have more specific needs and who have been traditionally excluded from participation. The situation of people living with dementia and children and young people served as an example of these patient groups, and the way in which they have worked in this area.

You can check the recording of the webinar here.

You can download the presentations here.

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Introduction to the Patient Engagement webinar series

Nicola Bedlington, EPF

The PARADIGM Project

Mathieu Boudes, PARADIGM Coordinator

What Patient Engagement is and how it should look like

Engaging with industry. The ECAB example

Giulio Maria Corbelli, EATG

How to engage with EMA and HTA

Elisa Ferrer, EURORDIS

Patient engagement in the case of potentially vulnerable populations

The case of people with dementia

Ana Diaz, Alzheimer Europe

The case of children and young people

Begonya Nafria, Sant Joan de Déu


Chaired by Koen Block, EATG

The webinar is organised by four European patient organisations and a research foundation. To know more about these organisations please visit:

European Patients Forum (EPF): www.eu-patient.eu

European AIDS Treatment Group (EATG): www.eatg.org

European Organisation for Rare Diseases (EURORDIS): www.eurordis.org

Alzheimer Europe: www.alzheimer-europe.org

Sant Joan de Déu Barcelona (SJD): www.sjdhospitalbarcelona.org

This webinar series is supported by PARADIGM (www.imi-paradigm.eu)