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. In line with this, we are partnering with Sunway Group to organise Malaysia’s first “Run for Rare” event. The run event will be held on 3rd March, at Sunway Medical Center, in conjunction with the World Rare Disease Day. We are targeting to have 3,000 runners at this charity run which will be flagged off by Health Minister, YBhg. Dr. Dzulkefly Ahmad.
With the theme of “Bridging Health & Social Care”, the association is focused on bridging the gaps in the coordination between medical, social, corporate and support services in order to tackle the challenges that people living with a rare disease and their families face every day. This is an opportunity to be part of a global call for policy makers, healthcare professionals, and care services to be better coordinated in all aspects of care for people living with a rare disease.
Runners can experience Rare Disease patients’ endure every day through the Run for Rare. There will be mini challenges set within the route of the run as a symbolising the difficulty in walking for patients with limited mobility due to muscular dystrophy.
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. Every week, fortnightly or monthly, patients of rare diseases will need to take medications, undergo treatments, attend appointments that encompasses physical therapy using special equipments, ENT, respiratory, ultrasound scan, x-rays and more. This is on top of participating in various social and community support services and respite care. Parents of children with rare diseases can hardly rest as their child tends to be hyperactive, even throughout the night. Moreover, these children are often warded due to complications and most frequently, pneumonia.
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. Approaches such as standards of care, networks of expertise and one-stop-services should be developed to aim at bridging the gap between health, social and community services and support providers. Therefore, we hope to be able to raise more awareness through this event and to enable patients and their families to get as much help as they need, financially and emotionally.
We hope every Malaysian will come together to support this event and play a part in building a better tomorrow for each other. Kindly log in to www.justonlineregistration.com to register for the race.
Share this event with your family and friends! #ShowYourRareShowYouCare!