About Us

BACKGROUND

One of the outcomes of the 2nd Malaysia Conference on Rare Disorders 2013 was the recommendation that the rare disease patient support groups 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.

OBJECTIVE

To provide a unified voice to speak for patients and families affected by rare disease in Malaysia.

OUR MISSION

  1. To provide a unified voice to speak for patients and families affected by Rare Diseases with the goal of improving the lives of Malaysians affected by Rare Diseases;

  2. To relieve sickness and to promote, protect and preserve the health of Malaysian patients and families affected by Rare Diseases;

  3. to advance and promote knowledge and education by raising awareness of Rare Diseases and by engaging in, encouraging and supporting research in Rare Diseases;

  4. To care and provide support and to relieve financial hardship for patient and families affected by rare diseases but not exclusively by the provision of grants of money and the provision of items, services and facilities;

  5. To work together and maintain links with governmental bodies and institutions with the goal of improving the lives of Malaysian who may be and who are affected by Rare Diseases.