RARE DISEASE DAY

WHAT IS RARE DISEASE?

  • There is no international definition for rare diseases which is why different countries have different definitions. 
  • There are some rare diseases that are undiagnosed or unable to get an accurate diagnosis.
  • Malaysia takes on the definition of a prevalence of less than 1 in 4,000 people in the community.
  • Rare diseases are often lifelong NOT contagious. In Malaysia, we call it rare disorders because of the stigma assuming that diseases mean it is contagious.

WHAT IS WORLD RARE DISEASE DAY?

  • Rare Disease Day is the official international awareness-raising campaign which takes place on the last day of February each year, for people living with rare disease, families, carers, and friends around the world. The main objective of the campaign is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patient’s lives.
  • World Rare Disease Day is the opportunity to advocate for rare diseases as a human rights priority at local, national, and international level as we work towards a more inclusive society. World Rare Disease Day was established in 2008 by EURORDIS. Malaysia first celebrated its World Rare Disease Day in 2010. This year, our key message for World Rare Disease Day 2024 is SHARE YOUR COLOURS!

WHAT IS MRDS?

  • The Malaysian Rare Disorders Society (MRDS) is a non-profit, voluntary organisation founded by families with rare diseases in 2004, guided by the Genetic Unit, Department of Paediatrics, University Malaya Medical Centre with the objective to represent and oversee the welfare of individuals including families living with rare disorders.
  • MRDS’ strategy is to:
    • To advocate and champion for access to quality healthcare, inclusive education, employment opportunities and other areas relevant to enable the rare disorders community in Malaysia to live a life with dignity and wellbeing.
    • To collaborate with stakeholders and the Government to drive and support the formulation and implementation of national policies, action plans and laws that are more inclusive related to rare disorders and persons with disabilities.
    • To develop strategies and champion programs that focus on uniting the rare disorders community and raising public awareness on rare disorders.
  • MRDS Youth Empowerment Program objectives include:
    • To improve employability;
    • To develop RD networks that energise, are good psycho-social support and financially self-sustainable with appropriate skills and knowledge;
    • To create public awareness through advocacy work; and
    • To develop next generation leaders in MRDS.

WHAT CAN YOU DO TO HELP?

This February in conjunction with World Rare Disease Day 2024, we need your help to spread awareness or rare disorders in your community and together, the WORLD.

How?

Take a picture alone or with friends and families with a placard showing one of the following hashtags. Post on your social media and tag us on Instagram (@officialmrds) and Facebook (Malaysian Rare Disorders Society) to help spread awareness!

JOIN US NOW!

Rare Journey of Love Book

Rare Journeys of Love presents 10 extraordinary stories of Malaysian families living with rare disorders.

Volunteer

Let’s join us as volunteer

Youth Platform Manager

Patient Group Coordinator

Infographics Designer

Program Manager

Rare Disease Video Challenge 2024

To create public awareness & participate in our advocacy campaign!

Youth Empowerment

Waulahh

Rare Catalogue

Art by The Rare Team

Donation

Support us: every cent you donate helps us strive towards the RD mission.

Events And Programs

To create public awareness & fundraise Malaysian Rare Disorders Society