European Medicines Agency renews IPOPI’s mandate

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The European Medicines Agency (EMA) recently confirmed that IPOPI’s application to renew its mandate on the Patients and Consumers Working Party (PCWP) was successful following a call for candidates for PCWP membership. Further to the EMA’s evaluation of the various candidates’ application dossiers, IPOPI was accepted as a PCWP member for the 2019-2022 mandate.

The Patients and Consumers Working Party (PCWP) is the platform within the European Medicines Agency that facilitates the discussions on topics of relevance to patients and consumers on the one hand and the EMA on the other. The Working Party was established in 2006 and since then, IPOPI has been a member represented by Jose Drabwell, member of the IPOPI Board. As such, Jose has contributed to the discussions on pharmacovigilance, medication errors or advanced therapy medicinal products. The involvement of IPOPI and other patient and consumer organisations in the EMA is key to ensure that the views of patients and consumers are taken into consideration in the pharmaceutical innovation and regulation at European level.

IPOPI Regional African Patients Meeting report published

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IPOPI held a Regional African Patients Meeting in Dakar, Senegal during the 11th and 12th of April 2019. The meeting was organised back to back with the 6th ASID Congress (African Society for Immunodeficiencies). This meeting offered a unique opportunity for patient representatives in the region to interact, and to experience both interactive workshops and educational lectures to increase the understanding of the conditions of PID patients.

Would you like to know more about this meeting? Below you find links to the programme, presentations, the meeting report and pictures!

This meeting was partly supported through an unrestricted grant from

IPOPI launches manifesto outlining PID patients’ priorities in the EU Parliament 2019-2024


IPOPI has published a manifesto entitled  “Rare disease priorities in the European Parliament: 2019-2024: the voice of PID patients” on the basis of the discussions held during the 12th IPOPI EU PID Forum.

The document calls for the prioritisation of care for patients with PIDs and to promote opportunities for healthcare professionals and researchers during the European Parliament’s next legislature. While awareness of PID care has significantly improved in recent years, a significant amount of work remains to be done. The EU needs to prioritise the delivery of lifesaving interventions across the region. This is especially true in the case of newborn screening for rare diseases and the promotion of equal and continuous access to immunoglobulin replacement therapies (IGs) and other therapies such haematopoietic stem cell transplantation or gene therapy for PID patients.

Johan Prevot, IPOPI’s Executive Director, stated that we should “not look at what the EU has achieved on rare diseases in the last 15 years as an accomplished job well done but as a solid foundation for further much needed EU actions on this topic”. It is with this in mind that IPOPI is committed to ensure the voice of PID patients continues to be taken into account in relevant upcoming EU health policies and initiatives.