DEBRA New Zealand

Dystrophic Epidermolysis Bullosa; EBS; EB Simplex; EBS Localised; EBS Dowling Meara; EBS Muscular dystrophy; EBS Autosomal recessive; EBS Superficialis; EBS lethal acantholytic; EBS plakophilin-1 deficiency; EBS pyloric atresia; EBS Ogna; EBS mottled pigmentation; EBS migratory circinate; Junctional EB; JEB Herlitz; JEB nonHerlitz; JEB pyloric atresia; JE inversa; JEB late onset; Dominant Dystrophic EB; DDEB generalized; DDEB acral; DDEB pretibial; DDEB nails only; DDEB bullous dermolysis of the newborn; Recessive Dystrophic EB; RDEB severe generalized; RDEB pruriginosa; RDEB pretibial; RDEB inversa; RDEB centripetalis; Kindler Syndrome

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More information can be found at http://www.debra.org.nz

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Our Collective

Rare Disorders NZ is the collective voice of all people living with a rare disorder and their whānau. Our rare collective is made up of more than 150 disorder-specific support groups.

Our work is informed by the issues important to our collective. We work together to improve healthcare and wellbeing for everyone living with a rare health condition in New Zealand.

DEBRA New Zealand

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Rare News

RDNZ discusses new attendance rules with officials

Inaugural Clinical Advisory Panel announced

Te Whatu Ora reset standing in the way of people with rare disorders getting the care they need

Pharmac’s early call for applications for rare disorder medicines welcomed

RDNZ seeks clarification on new attendance rules

Biennial Support Group Lead Hui

Rare disorder community celebrates Aotearoa’s first Rare Disorders Strategy

RDNZ invited to release of Letter of Expectation to Pharmac

Our Collective