Navigating life with a rare disorder can be overwhelming, whether you’re a patient or a caregiver. Your journey is unique, and your role is essential.
To support you, we’ve put together a list of helpful resources in Singapore. These organizations are here to provide guidance, information, and a strong sense of community for both patients and caregivers.
Rare Patient Support Groups
RDSS is a pillar of support for individuals and families facing rare diseases. We provide vital information and psychosocial assistance, empowering caregivers with insights into disease management and caregiving practices. Our unwavering support extends from navigating complex medical procedures to offering emotional guidance, ensuring families never face these challenges alone. Through our dedicated siblings’ network, we foster connections among young hearts, helping them navigate the unique struggles of rare families. Additionally, RDSS offers financial aid, with subsidies for medical interventions, therapy, and other essential needs, ensuring families have the resources to confront the financial burdens associated with rare diseases.
https://rdss.org.sg/
Get a copy of Rare Disorders Patient Handbook here.
ADSG supports individuals with autoimmune diseases by providing resources, education, and a supportive community to improve their quality of life.
https://www.adsg.org.sg/
Dystrophic Epidermolysis Bullosa Research Association, Singapore (DEBRA Singapore), is a support group for patients living with congenital epidermolysis bullosa, a rare skin condition that in its most severe forms affects all of the body’s linings, the skin, the linings of the mouth and oesophagus, and even the eyes.
HAE Singapore focuses on raising awareness and improving the lives of those affected by Hereditary Angioedema, providing education and a support network for patients and caregivers.
The Haemophilia Society of Singapore (HSS) is a registered charitable organisation seeking to empower haemophilliacs to lead normal and productive lives.
MDAS (Muscular Dystrophy Association (Singapore)) was founded in 2000 to provide care and support to people with Muscular Dystrophy (MD) in Singapore. They are committed to providing health and public education on MD as well as supporting medical research.
MNDa Singapore raises awareness and provides support for individuals with Motor Neurone Disease (MND) through community outreach, resources, and assistance programs.
MSSS empowers individuals affected by Multiple Sclerosis through education, therapy programs, and advocacy to ensure they can lead fulfilling lives.
This organization raises awareness of Pulmonary Hypertension (PH), supports patients, and promotes access to specialized care and resources for managing this rare lung condition.
RSCS supports individuals with rare skin conditions by providing a platform for advocacy, awareness, and collaboration with healthcare professionals for improved treatment and understanding.
Other Organisations
Club Rainbow
CRS helps more than 1,000 families and offers a vibrant array of free services. This includes personalised counselling, group sharing sessions, social activities, tuition and financial assistance when necessary. In January 2007, Club Rainbow established its first purpose-built facility – Rainbow Family Care Centre. This serves as the focal point of our many services and activities. It has two other branches located in the KK Women’s and Children’s Hospital and in the National University Hospital.
Today, Club Rainbow (Singapore) takes on a holistic approach to conduct numerous events and programmes for our beneficiaries; ensuring psychosocial, financial, educational, informational and social support.
Caring SG
Caring SG is a community-driven initiative focused on supporting caregivers in Singapore by providing resources, education, and peer support to help them navigate their caregiving journey effectively.
Serving People with Disabilities (SPD)
Serving People with Disabilities provides day care, social service support, rehabilitation, education, and employment training for people with special needs.
Asian Women’s Welfare Association (AWWA)
AWWA provides community-based programmes for people with special needs across all ages. The AWWA Centre for Caregivers runs mentoring programmes as well as counselling sessions for caregivers.
MS Care by City Harvest Church
https://www.chc.org.sg/ministry/community-services/
YWCA Of Singapore
http://www.ymca.org.sg/
Medical Resources
PUBLIC
Hospitals in Singapore
http://www.hospitals.sg/hospitals
KK Women’s and Children’s Hospital
The NENS Laboratory provides screening for genetic defects causing metabolic disorders in babies born in Singapore. The multidisciplinary team at Psychological Medicine may help meet the emotional needs of your child.
Health Services Authority Clinical Trials Register
You can find a list of all the active clinical trials in Singapore in this register.
http://www.hsa.gov.sg/content/hsa/en/health_products_regulation/clinical_trials/overview/clinical_trials_register.html
Fabry and Gaucher Symptoms Matcher
If you are suspected to having Fabry or Gaucher Disease, you may use the following link to find out more.
PRIVATE
Collaborative Care Notebook from Utah Family Voices
You may use this care notebook as a template to keep track of your child’s medical conditions.
http://www.utahfamilyvoices.org/links/
Assistive Device Loan Library
This library allows people with disabilities to rent devices and offers case-by-case subsidies.
http://www.spd.org.sg/
Financial Assistance
Public
Special Education Financial Assistance Scheme
Offered by the Ministry of Education, the scheme provides a full waiver on school fees, textbooks and school uniform for special education students.
https://www.moe.gov.sg/education/special-education/financial-assistance-for-sped-students
Private
Rare Disorders Society (Singapore) Fund
The fund offers financial assistance through the Medical Intervention Support Programme, the Power For Life Programme, and the Consumable Support Scheme.
https://rdss.org.sg/causes/
Private Intervention Subsidies
These subsidised private intervention programmes help children with disabilities develop their communication, physical and intellectual skills.
https://www.sgenable.sg/
Caregivers Training Grant
This grant provides an annual caregiving training subsidy of SGD 200.
https://www.silverpages.sg/CTG
Make A Wish
https://www.makeawish.org.sg/
Educational Resources
Public
Services for Children with Special Needs
These early intervention programmes and support services include Early Intervention Programme for Infants and Children, the Integrated Child Care Programme, and Development Support & Learning Support Programme.
https://www.sgenable.sg/
List of Public Special Education Schools
https://www.moe.gov.sg/education/special-education
Private
List of Private Special Education Schools
https://www.actualyse.com/
Beautiful Mind Charity
Beautiful Mind Charity provides musical training for children with disabilities and organises mini-concerts at schools, nursing homes and hospitals.
https://www.bmcsg.org/
General
Enabling Guide : First-stop resource for persons with disabilities and their caregivers
The Enabling Guide is for anyone looking for information and advice on schemes, services, supports and resources related to disability in Singapore. The Enabling Guide is for persons with disabilities, and their caregivers, friends, and support team. It is also for community leaders, educators, healthcare providers and employers wondering how they can better support their constituents, students, patients and employees with disabilities.