Amplifying the collective voice of New Zealanders with rare disorders

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 160 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.

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Rare News

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

Patient advocates meet with Labour to discuss medicine access

Briefing on medicine access issues for rare sent to new Pharmac Chair

Rare disorder patients desperate to know if their medicines will be funded in new Pharmac budget allocation

Call for Expressions of Interest in new Rare Disorders Research Network Development Group

Call for Expressions of Interest in new Clinical Advisory Panel

Our Collective