Epidermolysis Bullosa — NDIS Support
Yes — Epidermolysis Bullosa can qualify for NDIS support. Epidermolysis Bullosa 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.
Epidermolysis bullosa (EB) is a rare group of inherited connective tissue disorders characterised by extreme fragility of the skin and mucous membranes, resulting in blistering, wound formation and scarring in response to minor mechanical trauma — or even spontaneously. The condition is caused by…
Epidermolysis Bullosa & the NDIS FAQs
- Is epidermolysis bullosa a List A NDIS condition?
- Yes — EB is on the NDIS List A. A confirmed diagnosis of EB from a treating dermatologist or clinical geneticist is sufficient for NDIS access without a separate functional impact assessment. The NDIS recognises that all forms of significant EB create substantial, lifelong functional impairment. Evidence of the…
- How much NDIS funding does someone with severe EB typically receive?
- NDIS plans for people with severe EB (particularly RDEB) often include very substantial funding to reflect the extraordinary daily support needs — wound care assistance, personal care, nursing supports, allied health (OT, physio, dietitian, psychology) and AT. Plans of $100,000–$500,000 per year are not uncommon for…
- Can NDIS fund wound care nurses for EB?
- Yes — NDIS can fund wound care nurses (registered or enrolled nurses providing wound care under the Nursing Supports line) for people with EB whose wound care needs cannot be met by an untrained support worker. For EB, wound care is a skilled nursing intervention requiring specialist knowledge of dressing products…
- Is there a cure or disease-modifying treatment for EB?
- There is no cure yet, but the treatment landscape is advancing rapidly. Filsuvez (birch bark extract) has received TGA approval as the first topical treatment that reduces wound healing time in junctional and dystrophic EB. Gene therapy clinical trials (for RDEB and junctional EB) have shown promising results. Cell…
- How does EB affect schooling and education?
- Children with EB require carefully planned school support: a safe physical environment (padded surfaces, no rough or high-risk activities), staff trained in EB wound care and emergency management, a healthcare plan for dressing changes and pain management during the school day, and modified participation in physical…
Epidermolysis Bullosa & the NDIS — practical guides
- Applying for the NDIS with Epidermolysis Bullosa
- Assistive Technology for Epidermolysis Bullosa
- Day Programs & Community Participation for Epidermolysis Bullosa
- NDIS Employment Support (SLES & DES) for Epidermolysis Bullosa
- NDIS Funding & Budget for Epidermolysis Bullosa
- Therapy & Allied Health for Epidermolysis Bullosa
- Finding & Managing Support Workers for Epidermolysis Bullosa
Related conditions
- Hydrocephalus and the NDIS
- Turner Syndrome and the NDIS
- Noonan Syndrome and the NDIS
- Batten Disease (NCL) and the NDIS
- Niemann-Pick Disease and the NDIS
- Wolf-Hirschhorn Syndrome and the NDIS
- Limb Amputation (Acquired) and the NDIS
- 22q11.2 Deletion Syndrome (DiGeorge) and the NDIS
- Achondroplasia (Dwarfism) and the NDIS
- Arthrogryposis and the NDIS
Sources
Reviewed by the Novida editorial team · last reviewed 2026-07-12. General information only — not medical advice.