Persatuan Pesakit Imunodefisiensi Primer Malaysia (MYPOPI) has more than 100 members, patients & families affected by Primary Immunodeficiency disease (PID); is a non-governmental and non-profit organization founded by patients that aims to spread awareness about PID, ensure opportunities for early diagnosis, and optimal healthcare for all PID patients in Malaysia. This association was established in August 2014. MyPOPI is also a permanent member of the International Patient Organization for Primary Immunodeficiencies (IPOPI).
What is TAPIR
MYPOPI has also come out with an official mascot “Tapir” in conjunction with WPIW 2015.
Why
Reasons for choosing Tapir to represent the PID Community in Malaysia:
- Tapirs are either endangered or threatened animals “RARE” – similar to PID patients if they don’t receive the proper diagnosis and treatment that they deserve. Same experienced by PID patients, patients with Primary Immunodeficiency Disease (PID) approximately 1 in 10,000 people are affected by PIDs, a number which is likely underestimated due to “missed” diagnoses.
- Tapirs are mammals that are often mistaken or confused for hippos, pandas, and anteaters. They are in the odd-toed hooved animal family, as are the horses and rhinos – PID often goes untreated because it is mistaken for ordinary infections. Infections in PID patients can turn chronic and generate long-lasting healthcare issues or be fatal if they are misdiagnosed, missed treatment, or not timely and adequately managed.
- Tapirs inherit jungle and forest regions of South-eastern Asia, including Malaysia. Hence it is truly a unique and local animal to represent the PID community in Malaysia.
Our Objectives
The aim of the organization is to provide support and as a representative to those affected with Primary Immunodeficiency (PID) in Malaysia, working with Professional Health Officer and relevant organizations to improve the quality of life, care, and health treatment of PID patients.
Our History
The Birth of MYPOPI: Beginning of a Hopeful Journey
October 2013
The first Malaysia PID Patients’ MeHieting & Workshop was held in collaboration with Malaysian Society of Allergy Immunology (MSAI) and IPOPI during the 6th NACLIS (National Clinical Immunology Symposium) International Conference in Kuala Lumpur.
January 2014
The MYPOPI interim committee was formed and by February it became an associate member of IPOPI. MYPOPI is a patient-driven, physician-supported organization, committed towards increasing awareness of PID, while improving conditions and providing support for patients, not just in Malaysia but regionally.
Today Onward
Since its inception, MYPOPI has embarked on its objective within the community through medical conferences, road shows and meetings with medical policy makers and even the Health Minister. MyPOPI had bridged out to its neighbouring country, helping with their efforts towards similar objectives. MYPOPI and MSAI had also jointly celebrated the World Primary Immunodeficiency Week with the mission to create awareness of PID through involvements of the mass media.
