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). Established in 2011, it aims to raise awareness on various life-threatening rare diseases. The society offers financial support through various supports such as Medical Intervention Support, Power For Life and Home-based learning and therapy support to over 100 beneficiary families with rare diseases in Singapore. Watch how life is like for families living with a child with a rare condition here.
RDSS is currently offering emotional, counselling and financial support to 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 time.
RDSS is currently the only organisation focusing and supporting rare disease patients in Singapore. Unlike other charities that focus on specific disease group or made rare genetic disease as one of the supported sub-groups, RDSS accept and support ALL patients currently diagnosed with rare diseases, including those undiagnosed cases.
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.
Our Charity UEN number is T11SS0113L. Please click here to find us on the charity portal and do view us in desktop version to access more detailed data.
RDSS aims to engage individuals and organizations, both private and public, to raise awareness on rare disorders and how we can all do a part to help patients living with rare disorders. Our collective efforts will allow patients to have access to sustainable treatments and live a quality life.
1. Public Advocacy
RDSS engages traditional and new media such as newspapers, magazines, television programs, films, publications, storybooks, facebook, twitter, blog and website to raise public awareness on Rare Diseases. The society also promotes and encourages CSR (Corporate Social Responsibility) and BSR (Blogger Social Responsibility) to help raise funds and create awareness of Rare Diseases.
2. Patient Support
RDSS aims to enhance capacities of its members through information, exchange, networking, mutual support, potential joint actions.
RDSS provides a platform for patients and their families to share their experience and knowledge with each other, as well as to provide support and encouragement. Recreational activities are also organised for patients and their families to provide them a chance to relax, relate and share. We hope to make them feel normal yet special. Some events can be organised with the general public, so that patients can feel understood and accepted.
RDSS hope to be the voice of people living with rare diseases . The society actively seeks sustainable treatment methods for rare disease patients. With public donations, RDSS lend a helping hand to families that need financial support.
4. Hospital Collaboration
RDSS collaborates with hospitals in various initiatives to help rare disease patients. With the collaboration, rare disease patients are able to access to costly therapies and home-care.
RDSS collaborates with various hospitals to raise awareness on rare diseases in Singapore.
RDSS participates in international rare disease conferences to learn from other societies and foundations to improve our service and support to RD patients in Singapore. Together with other rare disorders organisations in Asia region, RDSS hope to promote rare diseases as an International Public Health priority.