New support group to provide social and community support for neurofibromatosis patients

Co-founded by individuals living with this rare genetic condition, the Neurofibromatosis Society Singapore seeks to close gaps in mental and emotional care

SINGAPORE, Aug. 18, 2025 /PRNewswire/ -- A new patient-led support group, the Neurofibromatosis Society (NFS) Singapore, has been recently registered with the Registry of Societies to provide emotional, psychosocial, and financial support for people affected by neurofibromatosis (NF) – a rare genetic condition that causes the development of tumours affecting nerves on the skin, brain, spinal cord and other parts of the body.

The group participated in the inaugural Regional Rare Skin Patients Support Group Summit 2025, jointly organised by the Asian Society of Pediatric Dermatology (ASPD) and the Rare Skin Conditions Society Singapore (RSCS). Titled "Beyond the Surface", the summit saw representatives from across Southeast Asia coming together to discuss the needs of those living with rare skin conditions.  

In Singapore, the number of individuals with NF is estimated to be in the hundreds, with NF Type 1 (NF1) being the most common diagnosis. NF1 manifests through symptoms such as multiple flat, light brown spots on the skin – known as "café au lait" spots – and soft bumps under or on the skin, called neurofibromas.^[1],[2] Patients are primarily treated at multi-disciplinary clinics established in recent years at the National Cancer Centre Singapore (NCCS) and KK Women's and Children's Hospital (KKH), where they can receive comprehensive care.

To further enhance patient support, healthcare providers from both institutions will work closely with NFS Singapore to provide guidance and care through a range of initiatives, including patient-led events, outreach and advocacy. Dr Nikki Fong, Consultant, Genetic Service at KKH, together with Clinical Assistant Professor Chiang Jianbang, Consultant, Cancer Genetics Service, NCCS, will be working closely with the group to guide their efforts and create a welcoming platform where NF patients can share their experiences and knowledge, helping them connect and build a strong support network.

"There is power in connection. Knowing you are not alone on this journey can be truly life-changing, whether you are a child or adult," said Yessika Sutawijaya, 44, a co-founder of the group who was diagnosed at the age of eleven. "We hope that with NFS Singapore, we can help others on a similar journey find strength and live life fully, even in the face of challenges."

As NF is often underdiagnosed, many patients live with feelings of isolation and a lack of information. This is often made worse by the social stigma and misunderstandings that come with visible changes in appearance, which can affect self-esteem and overall quality of life from childhood through adulthood.^[3],[4]  

"Growing up with a rare, lifelong condition like NF can be especially challenging for children - not just physically, but emotionally and socially as well," said Dr Fong. "Beyond medical treatment, young patients and their families need continual emotional and mental support. This group will play a pivotal role in addressing those unseen needs, complementing the clinical journey with peer and psychological support."

Lai Chee Chong, 45, another co-founder of NFS Singapore, reflected on his own childhood, "As a child, living with NF affected my self-confidence. I found it difficult to make friends because people thought my condition was contagious. Now, I want to help create more awareness on NF."

NFS Singapore was established in close collaboration with organisations such as RSCS, and with the support of corporates such as biopharmaceutical company AstraZeneca.

Ms Kim Suyeon, Country President, AstraZeneca Singapore, said, "AstraZeneca is committed to supporting an initiative that puts patients with NF at the heart of everything, ensuring they feel seen, heard, and supported beyond clinical care."

Notes

This information has been provided to facilitate patient education and disease awareness only. It is not a complete guide to neurofibromatosis. For more information, please speak to your healthcare provider.

Approval code: SG-9695_CA_150825

SOURCE Neurofibromatosis Society Singapore