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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

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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.

IPOPI helps make WPIW a reality in all world regions

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IPOPI is working hard on making WPIW a reality in as many countries as possible. As one of the founding organisations of the campaign, IPOPI actively contributes to the coordination of the global campaign tools and materials in collaboration with partner organisations of the World PI Week steering committee. In addition IPOPI is supporting  its National Member Organisations (NMOs) across the world in their efforts to implement the World Primary Immunodeficiency Week Campaign. IPOPI and its NMOs are part of a global movement that aims to improve the situation of patients with PIDs, their families and healthcare professionals who treat these patients, so to ensure that those persons affected by PIDs receive the earliest possible diagnosis and the best treatment and care.

To make this possible, this year IPOPI is pleased to support 31 campaigns from its national member organisations all around the world. IPOPI firmly believes that the key of the campaign’s success lies in a strong implementation process at the national level. With this year’s campaign, IPOPI has supported more than 150 national awareness campaigns in all continents.

IPOPI would like to express its thanks to its corporate partners Takeda and Grifols for their generous support to IPOPI’s WPIW Programme.