We are a registered charity and governed by constitution approved by MOH.
To ensure good governance and management, a Board of Directors were elected to act in the best interest of RDSS and they are actively involved in the management and decision making process, and jointly make decisions as a Board on policy matters.
The board members of Rare Disorders Society (Singapore) comprise entirely of volunteers. They do not receive payment for their services to the Society.
RDSS governing board members
- Exercise strict control over financial matters of the charity in order to:
Ensure the charity remains solvent;
Ensure charitable funds and assets are used reasonably, and only for the furtherance of the charity’s objects; and
Avoid undertaking activities that will place charity funds, assets and reputation at undue risks;
Ensure that the charity complies with the Charities Act and Regulations, and with the requirements of the Office of the Commissioner of Charities or Sector Administrators
Stay true to the charitable purposes and objects, and abide by the rules set out in the charity’s governing instrument;
Ensure proper management of the charity such that it is not opened to abuse and avoid conflict of interests.
Day-to-day operations are managed by a team of volunteers who are appointed to be the Office bearers and they meet regularly and manage the daily running of the Society. These volunteers are devoted to create a empathetic society for individuals and their families, living with rare diseases.
Rare Disorders Society (Singapore) Board Of Directors
President
Mrs. Patricia Mah is the President and Co-founder of the Rare Disorders Society (Singapore) – RDSS. She and the team raise the awareness of rare disorders amongst the public. Patricia dedicates her time to support other families with children living with rare disorders and also works as a Head of Human Resources.
Patricia is a mother to 2 beautiful children, Chloe (14 years old) and Cayden (11 years old). She is the emotional pillar to her elder daughter, Chloe (14 years old), who was diagnosed with Pompe disease when she was 7 months old. Her tremendous dedication and immense love for Chloe allowed her to blossom into a confident and inspirational teenager.
Patricia, a veteran in the financial industry and an ACTA certified trainer, holds a Master of Business Administration from Universitas 21 Global, Bachelor of Business Administration from the National University of Singapore, Diploma in Life Insurance from the Singapore College of Insurance and many other professional qualifications.
Vice President
Mr. Kenneth Mah is the Vice President and Co-founder of the Rare Disorders Society (Singapore). Together with his wife, Patricia Mah, he leads the rare disorders community in Singapore. Under his leadership, RDSS was awarded the charity status in 2015 and received IPC status in 2022. Kenneth is also a member of the SingHealth Patient Advocacy Network (SingHealth SPAN) and KKH SPAN since 2017 and 2023 respectively. Kenneth is appointed as the ACE Consumer Panel member in Apr 2024 to support ACE in their effort to promote greater public understanding of HTA processes.
His extraordinary dedication in juggling between family and helping the community earned him the SingHealth Inspirational Patient and Caregiver Award in 2012, and the Club Rainbow Exemplary Caregiver Award in 2019. In September 2023, Kenneth was conferred the Singapore Silent Heroes ”Outstanding Adult” award by Deputy Prime Minister Lawrence Wong.
Honorary Secretary
Ms. Amanda Chen is a certified and experienced Art Therapist and Art Educator (registered with MOE-AMIS). She is active and current in the social work scene for the past decade and has worked with many charities and social enterprises. She was the former Deputy Director of Social Creatives and currently sits on the board as Honorary Secretary of the Rare Disorders Society (Singapore).
Prior, Amanda has been in the advertising industry for several years before starting her own branding and design agency that was running for more than 12 years. The healing arts and the work of a therapist resonated so deeply with her, she decided to pursue her Masters in Art Therapy to become an Art Therapist.
Amanda is an Art Therapist with Art for Good, The Red Pencil, The Therapy Platform, and Thrive Psychology Clinic. She is also a lecturer at the School of Positive Psychology for a module in Art Therapy. She manages and oversees all the projects and programs under Art for Good, which uses art to create good.
Medical Director
Clinic Associate Professor Tan Ee Shien is the Head and Senior Consultant of Genetic Service in KK Woman’s and Children’s Hospital. She holds a position within the SingHealth Duke-NUS Genomic Medicine Centre as a Director of Clinical Service. With her specialty in Paediatric Genetics, she has worked on different medical conditions such as Pompe Disease, Turner Syndrome and more. Prof Tan was an advisor to RDSS since 2011 and decided to join the board in 2015 when RDSS obtained it’s charity status.
Throughout her career, she has contributed significantly with her participations on different medical research papers – 39 publications, co-authored with her colleagues within the medical field.
Programme Director
Mr. Rajakanth has more than 20 years of experience in healthcare advocacy, policy and governance. As Executive Director of Rainbow Across Borders, he created specific illness patient access programmes and campaigns. He initiated and built an extensive network comprising policy makers, industry players, healthcare professionals and patients with regional and local platforms.
While working with multiple stakeholders in economically and culturally diverse countries in the Asia Pacific region, Raj has been able to revitalise strategies to overcome a multitude of challenges in the healthcare sector with creative solutions.
Raj strongly believes in the power of the patient voice and the need for a patient-centric community. Over the years, he has been actively supporting the patient community by creating opportunities for patient support groups to train, connect and collaborate in the Asia Pacific region.
Education Director
Mr. John Monteiro’s passion for philanthropy can be seen in his keen involvement with Singapore’s needy. He has volunteered at the Singapore Association for the Visually Handicapped, and is a Board Member of the Rare Disorders Society (Singapore). His annual student recitals raise funds and increase social awareness for the three groups he supports passionately: the terminally ill, people with special needs, and those from broken homes.
John has had the honour of performing for then Prime Minister Goh Chok Tong, as well as late Minister Mentor Lee Kuan Yew. He comes from a family of renowned musicians, including Jeremy Monterio and Claressa Monteiro. His late father was Emeritus Professor Ernest Steven Monteiro, Singapore’s ambassador to the United States of America, Cambodia, Argentina and Brazil.