IPOPI also organised the first Asian Regional Patients Meeting in Hong Kong on April 27 and 28. The regional meeting was a great success with 32 attendees, representing patients, parents, NMO leaders, physicians and nurses from Malaysia, Singapore, Hong Kong, Laos, Indonesia, Vietnam, India, Japan, Thailand and the Philippine. The two-day event started off with medical lectures with background information and new developments on PIDs and two specially designed workshops followed. The first workshop looked at the region key successes and challenges and the second focused on the PID Principles of Care, inviting attendees to analyse their top national priorities to better tailor future actions.
IPOPI has been working closely with its National Member Organisations (NMOs) from eleven countries to launch a new Primary Immunodeficiency Burden of Treatment study. United Kingdom, through PIDUK, was the first to launch the questionnaire on April 27 and four more countries have followed. This new project is being done in partnership with the University of Sheffield (UK) and a clinical research company, Parexel. The objective of the Study is to quantify and measure the impact of the different immunoglobulin treatments adults take to manage their PID. “We believe it is important to understand the impact that different immunoglobulin therapies represent in patients’ daily lives to better assess the quality of live these patients actually have. The study will also provide outlooks on how to further improve treatments and enable patient representatives to have quantitative data they can use in their advocacy and educational activities” said Johan Prévot, IPOPI’s Executive Director.