Our Mission:
To improve the lives of patients living with rare diseases, and their families. We embrace equity and inclusivity to empower them to live a good quality life.
Our Vision:
To be an empathetic and effective Patient Organisation.
Currently, we care for more than 200 beneficiaries and those living with them, impacting more than 800 lives.
What is rare disease?
In Singapore, a disease is considered rare when it affects 1 in 2,000 people or less.
Rare disease is rare in terms of prevalence of one type of disease, however, collectively it may not be as rare as you might think. There are currently estimated 350 million people living with a rare disease globally. For the last 5 years, there is estimated 1 rare disease patient discovered from between 10 – 20 families in Singapore.
Rare disease patients often face multiple disabilities and the challenges they face are uniquely complex and often misunderstood.
How do we help?
RDSS provides information and psychosocial support to our beneficiaries and their families to access timely disease information and caregiving practices to empower them to better care for their loved ones.
1. Rare Disease Information
2. Caregiving Information
3. Centre of Excellence (to be launched)
Our support network is unwavering, standing alongside families as they face daily caregiving challenges.
From managing complex medical procedures (e.g. suctioning, changing of tubes, wound care, seizures) to coping with the emotional strain, RDSS empowers patients and parents with the knowledge and resources they need to troubleshoot these daily demands, ensuring that families are never alone on their journey.
It takes a community to nurture a child, especially one with complex care needs. Our siblings’ network unites young hearts, growing together, and embracing the distinctive challenges of rare families.
1. Caregivers Network
2. Siblings Network
3. Caregiver Respite Service (To be launched)
4. Events and Activities
We extend financial support to ease the burden, providing families with the necessary financial resources to navigate the unique challenges that come with rare diseases.
1. Medical Intervention Subsidy
2. Power for Life Program
3. Special Formula Subsidy
4. Optical / Dental Subsidy
5. Therapy Support Subsidy
6. Home-Based Learning*