Singapore has a new non-profit organisation dedicated to improving research and treatment access for children with rare brain cancers.

DIPG Alliance Ltd. was founded by three Singapore families who lost their daughters to Diffuse Intrinsic Pontine Glioma (DIPG), an aggressive childhood brain tumour that develops in the pons. The organisation aims to support research, improve access to clinical trials and emerging therapies, and provide support for affected children and families.

DIPG primarily affects young children and remains particularly difficult to treat. Median survival is around nine to 11 months, while radiotherapy remains the standard treatment and can provide temporary relief rather than a cure.

Finding specialist care for rare cancers

One of the broader challenges with rare cancers is finding clinicians who have sufficient experience with a particular tumour type. Research cited by Tamarind Health estimates that rare cancers collectively account for around one in five cancer diagnoses, even though each individual cancer affects relatively few people.

In September 2026, Tamarind Health launched a Rare Cancer Centre in Singapore, bringing together oncologists with experience across rare and complex cancers including sarcoma, lymphoma, neuroendocrine tumours, uncommon skin cancers and brain cancer. The centre is intended to give patients, caregivers and referring doctors a single route to relevant specialist expertise rather than requiring them to identify and approach individual practices themselves.

One of the Alliance’s first initiatives is its partnership with KK Women’s and Children’s Hospital (KKH) under the KKH Integrated Neuro-Oncology Development (KIND) Programme. The programme aims to strengthen Singapore’s paediatric brain tumour research capabilities and expand opportunities for children to participate in international clinical trials.

DIPG Alliance is also supporting compassionate access to experimental therapies such as EnGeneIC Dream Vectors (EDV) and exploring emerging approaches including CAR T-cell therapy. These treatments remain investigational, with further clinical research needed to establish their effectiveness.

The organisation aims to raise S$5 million over five years towards a long-term paediatric brain tumour research fund with KKH, supporting research, clinical trials and international collaboration.

For more information, visit DIPG Alliance at dipgalliance.org.

Images: DIPG Alliance