ABOUT US

VISION

A future where all individuals living with rare disorders and their families in Malaysia experience better quality of life, through full recognition, equitable opportunity and access to support, including for health and social care.

MISSION

  • Provide support to individuals and families affected with Rare Disorders.
  • Develop strategies and programs to raise public and professional awareness on Rare Disorders.
  • Ensure Human Rights of access to healthcare education, job opportunities are upheld.
  • Participate in the formulation and implementation national policies in Malaysia related to person with rare disorders and rare disorder

OBJECTIVES

  • Create a network among individuals and families with rare disorders.
  • Create a network among MRDS members with organisations, agencies and professionals involved in treating, educating and conducting research on rare disorders.
  • Serve as a contact and resource centre on rare disorders.
  • Promote awareness on rare disorders throughout Malaysia.
  • Support and assist individuals and families affected by rare disorders in terms of welfare, treatment, rehabilitation, education and socials needs.
  • Collaborate with agencies and organisations that diagnose, research and treat rare disorders to increase the quality of life for the individuals and families affected.
  • Raise funds to support the activities and objectives of MRDS.

STRATEGIES

Advocate

We advocate & champion for access to quality healthcare, inclusive education, employment opportunities and other areas relevant to enable the rare disorders community in Malaysia to lead a life with dignity & wellbeing.

Collaborate

We collaborate with the Government and all stakeholders across the rare disease ecosystem to drive & support the formulation and implementation of national policies, action plans and laws that are more inclusive for persons and families living with rare disorders and disabilities.

Enable

We work together to develop strategies and champion programs that focus on participation and enablement to unite the rare disorders community, foster camaraderie, accelerate stakeholder capacity and raise public awareness on rare disorders in the country and beyond.