Rare Disorders Society (Singapore)
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Mission Statement
Rare Disorders Society (Singapore) is a non-profit organisation initiated by parents of children with LSD (Lysosomal Storage Disorder). Established in 2011, it aims to create awareness about various life threatening rare diseases (RD). Rare Disorders Society (Singapore) is currently the only organisation focusing and supporting only on rare disease patients in Singapore. Unlike other charities that focus on specific disease group or made rare genetic disease as one of the supported group, RDSS accept and support ALL patients currently diagnosed with rare diseases, including those undiagnosed cases.
About This Cause
Individuals with rare diseases form a minority of our society and receive little or no attention. Due to the lack of resources, they may not receive timely and accurate diagnosis which can cause serious complications including disability and death. Rare Disorders Society (Singapore) a.k.a RDSS is a charity initiated by parents of children with LSD (Lysosomal Storage Disorder). It aims to raise awareness on various life-threatening rare diseases. The society offers financial support such as Medical Intervention Programme, Home-based learning and Art-therapy support to beneficiaries living with rare diseases in Singapore. RDSS is currently offering emotional, counselling and financial support to over 500 children, family or friends with rare diseases in Singapore. RDSS provides support networks and resources to positively impact affected patients and families and we hope to build a center of excellence for patients and their families. Our objectives are to improve the lives of patients and their families who have been diagnosed with a rare or ultra-rare disease. We aim to raise the profile of rare diseases among the health authorities, health services and drug manufactures to improve research and development of orphan drugs. The charity understands the fight on a deep personal level and keep in mind the needs of our community at all times By providing acknowledgement and investment, RDSS looks to improve lives with timely, accurate diagnosis and intervention. Through building a well-established system, it also aims to encourage society to join parents of RD patients in creating a better future for them.