Rare disease in Malaysia: Challenges and solutions.

ABSTRACT:

Objective

Rare diseases are often underdiagnosed, and their management is frequently complicated by a lack of access to treatment and information about the diseases. To allow for better policy planning, we sought to examine the current status of managing rare diseases in Malaysia.

Methods

This study was conducted in two phases. In the first phase, we triangulated information from reviews of journal publications, documents from the Malaysian government and in-depth interviews among selected key healthcare stakeholders in Malaysia. The second phase was designed as a cross-sectional survey to estimate the number of cases and treatment coverage for rare diseases in Malaysia.

Results

Malaysia has no official definition of rare disease yet but currently in the process of re

SUBMITTER: Shafie AA 

PROVIDER: S-EPMC7117672 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature