Primary immunodeficiency (PID) patient representatives and doctors from 5 South East Asian countries gathered in Kuala Lumpur, in Malaysia, for the IPOPI Regional Advocacy and Media Training Workshop, on September 22-23, 2018. Participants identified key issues that affect their countries and trained for when they need to face a meeting with the Health Ministry and press conferences!
The meeting had a joint open session in collaboration with the Malaysian Society for Asthma and Immunology (MSAI) and was honoured with the presence of Dr Nazrila Hairizan Nasir, Deputy Director Primary Health from the Family Health Development Division, from the Malay Ministry of Health. Speakers welcomed MSAI members and patient representatives to the meeting and then started discussing what advocacy meant and what were the keys for a successful campaign. The “Primary Immunodeficiencies Principles of Care” (PID PoC) were showcased as an advocacy tool that could provide patient representatives and doctors the fundamentals to start building their advocacy campaign.
Participants then divided into groups and the IPOPI Regional Advocacy and Media Training Workshop started. Patient representatives from Indonesia, Malaysia, the Philippines, Thailand and Vietnam discussed the challenges in their respective countries and then jointly identified the common challenges throughout the region.
The second day of the Workshop was dedicated to a fun and instructive role play session in which patients and doctors faced a meeting at the Ministry of Health and a press conference. The role play aimed at preparing patients and doctors for future meetings as well as providing them with the skills and tips necessary for them.
IPOPI would like to thank CSL Behring for the support provided to the workshop.