IDEAS is launching a new project called Championing for the Rare. In Malaysia, the voices of patients with rare diseases is not well heard, and they are not well supported either. As a result, many cases are left untreated or even undetected. Patients may not even know what choices they have when it comes getting treatment, and they do not even know where to go for support. Much of this has to do with the fact that Malaysia have yet to have a national policy on rare diseases.
This project aims to raise public awareness and support as well as develop and advocate for a national policy.
In conjunction with this launch, IDEAS is holding a symposium to discuss the challenges and solutions in Malaysia.
By Ali Salman, Institute for Democracy and Economic Affairs (IDEAS)
By Associate Professor Dr. Asrul Akmal Shafie, Universiti Sains Malaysia (USM)
|0920-0950||:||National Policy on Rare Diseases – Living with dignity: In search for solutions for rare diseases
By Prof. Dr. Thong Meow Keong, University of Malaya Medical Centre
|0950-1020||:||Dilemma of rare disease patients
By Dato’ Hatijah Ayob, President, Malaysian Rare Disorder Society and Muha Aziz, Malaysian Rare Disorder Society
|1040-1110||:||Access to treatment for rare disease in Malaysia
By Dr. Azuwana Supian, Pharmaceutical Services Programme, Ministry of Health Malaysia
By Dato’ Dr Haji Azman bin Bakar, Deputy Director General (Health), Ministry of Health Malaysia*Session will end with Prof. Thong Meow Keong presenting the position paper to Dato’ Dr Haji Azman
|1140-1210||:||Challenge in Clinical Management of Rare Disease
The session will generally discuss the challenges facing the diagnosing, monitoring and treating rare disease. It will ends with suggestion how it could be overcome and implemented.
By Dr. Ngu Lock Hock, Genetics Department, Hospital Kuala Lumpur
|1210-1240||:||Challenge in Funding and Access of Medicines for Rare Disease
The session will generally discuss the options that exist to make funding and access of valuable orphan drugs sustainable for health care systems while also providing ‘fair’ reward to manufacturers that invest in these areas of high unmet need. The session will begin an overview of the rate of health technology assessment approval and reimbursement of orphan drug, followed by insights from the current approach/challenges of evaluating, funding and providing orphan drugs (legislation, managed entry agreement), and suggestion of how to improve the current situation.
By Dr. Asrul Akmal Shafie, School of Pharmaceutical Sciences, USM
(Quick photo session with all speakers)
|1430-1500||:||Paving the way for a Rare Disease Policy in Malaysia
This session seeks to discuss the where Malaysia is in terms of rare disease policy and what are the challenges that is preventing its creation. It will also touch on suggestions on overcoming these challenges and what steps can be taken to make a national policy on rare diseases a reality.
By Dato’ Dr Hj Bahari bin Dato’ Tok Muda Hj. Awang Ngah, Director, Medical Development Division, Ministry of Health
|1500-1630||:||Panel discussion: Rare Disease in Malaysia – Where do we go from here?
This panel session will bring together all speakers of the day and discuss where do we go from here with regards to the issue.
Moderator: Wan Ya Shin, IDEAS
Panelists: Prof. Dr. Thong Meow Keong, Dato’ Hatijah Ayob, Dr. Ngu Lock Hock, Dr. Asrul Akmal Shafie, Dr Azlina Ahmad Annuar (Medical Faculty, Universiti Malaya) and Mr Lee Yee Seng (Malaysian Lysosomal Disease Society)
By Ali Salman, Chief Executive Officer, IDEAS
Please follow the link below for more details.