The World Rare Disease Day takes place on the last day of February each year. The main objective of the Rare Disease Day is to raise awareness amongst the general public while encouraging researchers and decision makers to address the needs of those living with rare diseases as due to limited awareness, many cases have gone undiagnosed.
We at Malaysia Lysosomal Diseases Association (MLDA) believe that building awareness of rare diseases is very important. This is because the daily life of patients and families with rare diseases can be challenging, and at some point, frustration and stress can make them feel like giving up.
The complexity of rare diseases, the strong relation to disability and the current unmet social needs must not be underestimated. This disease requires urgent attention from all stakeholders involved in care provision, i.e. from healthcare, social and community services.
In line with this, we are thankful that #MY1200 organizer is willing to assist MLDA to create greater awareness in conjunction with World Rare Disease Day 2020. The program is always there to remind everyone that it’s with each pedal stroke that we should be reminded those less fortunate, of those ailing and even those who are no longer with us. The ride in MY1200 is hard, which for the entire team, only makes the day more joyous and meaningful!