Southeast Asia Rare Disease Awareness Raising Workshop

Southeast Asia Rare Disease Awareness Raising Workshop

Main Organisers: SASS Monash, Congenica (UK), International Alliance of Patients’ Organization (IAPO), and International Experience Exchange with Patient Organisations (IEEPO)

Date: 27 October. Time: 2:30pm - 6:00pm (Malaysia Time)/ 7:30am - 11am(UK Time). Virtual Event

Rare diseases pose fundamentally different challenges from those of more common diseases. Problems include the small number of patients, the logistics involved in reaching widely dispersed patients, the lack of validated biomarkers and surrogate end-points, and limited clinical expertise and expert centres. One of the remarkable and unique aspects of the recent history of rare disease research has been the evolving role of patient advocacy groups and the collaborative partnership that exists among such groups and the scientists who study rare diseases, as well as the government officials charged with overseeing medical research and regulatory processes. 

This workshop aims to raise awareness of the importance of patient and family engagement in the planning and delivery of health and care services for those living with rare diseases in the Southeast Asian region; highlight examples of imaginative and successful innovations from a range of different countries to serve as exemplars of good and interesting practice that may prove inspirational and capable of being translated into other health care contexts across the region. The event is also an opportunity for individuals/organizations already involved in patient advocacy work and interested clinicians or researchers in the region (SEA) to network and collaborate in knowledge sharing activities.

This event is jointly organised by the Monash University Malaysia (School of Arts and Social Sciences, Jeffrey Cheah School of Medicine and Health Sciences, Malaysia Immersion and Pathway), Congenica, and the International Alliance of Patients’ Organization (IAPO)

Please register your interest here:

You can also read about last year’s event, Epilepsy Advocacy: Challenges and Opportunities, at the Congenica blog

For more information, please contact:
Dr Aiedah Khalek - aiedah.khalek@monash.edu
Dr Tan Meng Yoe – tan.meng.yoe@monash.edu
Associate Professor Mohd Farooq Shaikh - farooq.shaikh@monash.edu

Tentative programme – Details of programme will be updated soon

UK TimeMalaysia TimeEvent
7:30am2:30pmParticipants Sign In
7:45am2:45pmWelcome
8:00am3:00pmKeynote Speaker
8:30am3:30pmPatient Stories
9:00am4:00pmBreak
9:30am4:30pmIndividual Presentation from around the region
10:30am5:30pmGroup Discussion - Building a network
11:00am6:00pmClose