Costello Syndrome — NDIS Support
Yes — Costello Syndrome can qualify for NDIS support. Costello Syndrome is on the NDIA’s List A, so the disability requirement is treated as met — the focus is confirming the diagnosis. Funding covers reasonable and necessary supports across daily living, therapy, social participation and capacity building.
Costello Syndrome is a rare genetic condition caused by mutations in the HRAS gene, a member of the RAS signalling pathway — a group of genes involved in cell growth and division. Costello Syndrome is one of a family of conditions called RASopathies, which includes Noonan Syndrome and…
Costello Syndrome & the NDIS FAQs
- Is Costello Syndrome automatically eligible for NDIS?
- Yes. Costello Syndrome is a List A condition and is likely to meet NDIS disability requirements automatically. A clinical and genetic diagnosis from a clinical geneticist confirming HRAS mutation is needed for the Access Request. Given the rarity of the condition, engaging a support coordinator familiar with rare…
- What cancer surveillance is required for Costello Syndrome?
- People with Costello Syndrome have an approximately 15% lifetime risk of developing tumours — particularly rhabdomyosarcoma (muscle), neuroblastoma (nerve tissue) and transitional cell carcinoma of the bladder. Regular surveillance — typically including annual abdominal/pelvic ultrasound in childhood and bladder…
- What is the RASopathy family of conditions?
- RASopathies are a group of genetic conditions caused by mutations in genes of the RAS-MAPK signalling pathway, which regulates cell growth and differentiation. The group includes Noonan Syndrome (most common), Costello Syndrome, Cardio-facio-cutaneous Syndrome, LEOPARD/Noonan Syndrome with multiple lentigines,…
- How are feeding difficulties managed in Costello Syndrome infants?
- Severe feeding difficulties in infancy are common in Costello Syndrome due to hypotonia, gastro-oesophageal reflux and oral motor difficulties. Many infants require nasogastric (NG) tube or gastrostomy (G-tube) feeding during the newborn period. Feeding therapy from a speech pathologist and OT is important as soon as…
- Are there Australian support resources for Costello Syndrome?
- Given the rarity of Costello Syndrome, Australian-specific support resources are limited. The International Costello Syndrome Support Group connects families worldwide and provides access to research and specialist medical knowledge. Clinical genetics services in major Australian hospitals can provide diagnosis…
Costello Syndrome & the NDIS — practical guides
- Applying for the NDIS with Costello Syndrome
- Assistive Technology for Costello Syndrome
- Day Programs & Community Participation for Costello Syndrome
- NDIS Funding & Budget for Costello Syndrome
- Therapy & Allied Health for Costello Syndrome
- Finding & Managing Support Workers for Costello Syndrome
Related conditions
- Klinefelter Syndrome and the NDIS
- Phenylketonuria (PKU) and the NDIS
- Neurofibromatosis and the NDIS
- Acquired Brain Injury and the NDIS
- Cerebral Palsy and the NDIS
- Epilepsy and the NDIS
- Multiple Sclerosis and the NDIS
- Motor Neurone Disease and the NDIS
- Parkinson's Disease and the NDIS
- Huntington's Disease and the NDIS
Sources
Reviewed by the Novida editorial team · last reviewed 2026-07-12. General information only — not medical advice.