Health x Wellness
Singapore’s New Support Group for Neurofibromatosis Patients Puts Connection First
Living with a rare condition can feel isolating — especially when it’s one that’s misunderstood, underdiagnosed, and visibly affects your appearance.
That’s why the newly launched Neurofibromatosis Society (NFS) Singapore is such a vital step forward. Co-founded by individuals living with neurofibromatosis (NF), the group is Singapore’s first patient-led initiative focused on emotional, social and community support for those affected by this rare genetic disorder.
NF causes tumours to grow along nerves in the skin, brain and spinal cord, and while it’s often diagnosed in childhood, its impact stretches across a lifetime — physically, emotionally and socially.
What Is Neurofibromatosis — and Why Does It Matter?
In Singapore, NF affects hundreds of individuals, with NF Type 1 (NF1) being the most common form. Symptoms include:
- Flat, light brown skin spots (known as “café au lait” spots)
- Soft bumps under or on the skin (neurofibromas)
- Potential complications involving the brain, spine and internal organs
While multi-disciplinary clinics at KK Women’s and Children’s Hospital (KKH) and the National Cancer Centre Singapore (NCCS) offer medical care, the emotional and psychosocial gaps have remained — until now.
A Community Built by Patients, for Patients
NFS Singapore was officially registered in August 2025 and made its debut at the Regional Rare Skin Patients Support Group Summit, hosted by the Asian Society of Paediatric Dermatology and the Rare Skin Conditions Society Singapore. The group aims to:
- Provide peer support and shared lived experiences
- Organise outreach and advocacy events
- Collaborate with healthcare professionals to complement clinical care
Dr Nikki Fong (KKH) and Clinical Assistant Professor Chiang Jianbang (NCCS) are among the medical advisors supporting the group’s efforts.
There Is Power in Connection
Co-founder Yessika Sutawijaya, diagnosed with NF at age eleven, shares:
“Knowing you are not alone on this journey can be truly life-changing. We hope NFS Singapore helps others find strength and live fully, even in the face of challenges.”
Fellow co-founder Lai Chee Chong reflects on his childhood:
“I found it difficult to make friends because people thought my condition was contagious. Now, I want to help create more awareness.”
Their stories highlight the emotional toll of NF — from bullying and stigma to reduced self-esteem and social withdrawal. Studies show that visible symptoms can deeply affect quality of life, especially in children and adolescents.
Backed by Experts and Industry Allies
Healthcare professionals agree that support must go beyond treatment.
“Young patients and their families need continual emotional and mental support,” says Dr Fong. “This group will play a pivotal role in addressing those unseen needs.”
The initiative is also supported by organisations like RSCS and corporate partners such as AstraZeneca Singapore, whose Country President Ms Kim Suyeon notes: “We’re proud to support an initiative that ensures NF patients feel seen, heard and supported beyond clinical care.”
