October 24, 2016
PID Principles of Care Implementation Package and Workshop
IPOPI is pleased to announce the publication of the ‘PID Principles of Care Implementation Package’, a new key document designed specifically for our National Member Organisations (NMOs) with a view to facilitate the use of the “Primary Immunodeficiencies Principles of Care” paper.
The Package was presented to IPOPI’s NMOs at the recent IPOPI Biennial Meeting in a workshop held on September 20 and aimed at supporting members in the implementation of the Principles, at national and regional levels.
The wokshop provided an excellent opportunity to present the NMOs with the tools developed by IPOPI. Dr Helen Chapel, Johan Prévot and Leire Solís presented the documents and engaged with the participants reviewing the progress made with the use of the Principles. The Implementation Package has a dedicated image and includes a Guide with information and guidance on how to prioritise and use the Principles according to each country’s environment. It includes several tips on how to use them in policy and awareness campaigns as well as especially designed infographics.
IPOPI extends its thanks to Shire for their support towards this important workshop.
Two years ago IPOPI led a Working Party of specialists to develop the “Primary Immunodeficiencies Principles of Care” which outlines the key elements that should be in place in each country and region to provide a “gold standard” framework of diagnosis and care for primary immunodeficiencies (PIDs). The paper identifies 6 Principles of Care: the role for specialised centres, the importance of registries, the need for international collaborations for scientific research, the role of patients groups, management and treatment options for PIDs, and, management of PID diagnosis and care throughout the world. IPOPI and the PID Principles of Care Working Party invited the PID community and stakeholders to use it for their awareness and policy actions.
Download the “PID Principles of Care Implementation Package” original version in English