Rare Diseases Alliance Foundation Malaysia (RDAFM) was formed to serve as a national alliance of rare disease patients’ support organisations in Malaysia. It seeks to provide a unified voice to speak for patients and families affected by rare disorders.
The Second Malaysia Conference on Rare Disorders held in 2013 was significant in that it was the first time that stakeholders (Ministry of Health Malaysia, universities and non-governmental organisations) were gathered to discuss the important theme of “Developing Strategies for a National Rare Disease Plan”. There were several key outcomes with the main one being a call for a national rare disease plan
Another outcome was the recommendation that the rare disease patients’ support organisations in Malaysia come together to form a national alliance. This recommendation was supported by the Ministry of Health, Malaysia. Malaysian Rare Disorders Society (MRDS), Malaysia Lysosomal Diseases Association (MLDA) and Malaysia Metabolic Society (MMS) initiated the formation of the alliance. RDAFM was subsequently established as a trust registered under the Trustees (Incorporation) Act 1952 in September 2017, which is under the purview of the Prime Minister’s Department.
Read the Executive Summary of the Second Malaysia Conference on Rare Disorders 2013 Report here.
Since its formation, RDAFM has engaged with stakeholders including government ministries, patients’ support groups and other NGOs to advocate for better healthcare policies and social support for rare disease patients and families. Besides that, RDAFM has organised and participated in activities to raise awareness of rare disease.
In 2019, the Ministry of Health developed a National Framework for Rare Disease and established a national committee to look into policies, programmes and strategies. RDAFM contributes as a member of the committee.
RDAFM has participated actively at meetings organized by regional and international bodies such as the Asia-Pacific Economic Cooperation (APEC) Rare Disease Network, (through its co-founder MRDS) the Asia Pacific Alliance of Rare Disease Organisations (APARDO) and in the WHO Collaborative Global Network 4 Rare Diseases under Rare Diseases International.