The RDNZ team has moved premises and we were privileged to have Toa Waaka, mana whenua and of Ngāti Toa descent, open our new office space and gift us the interim name for the office: Te Toropaepae o te Kōtuku. It’s literal translation: “the perch of the Kōtuku (white heron)”.
We were really excited to present at a professional development session with the Ministry of Social Development’s Regional Health and Disability Advisors this week, letting them know about Rare Disorders NZ and some of the challenges and barriers people living with rare disorders face when accessing support from Work and Income.
Rare Disorders NZ and Whānau Āwhina Plunket teamed up to design a course for Plunket nurses called Supporting whānau who experience rare disorders in Aotearoa. The course aims to upskill Whānau Āwhina staff in the early identification, referral and support of affected whānau with rare disorders.
Rare Disorders NZ is alarmed that despite Manatū Hauora working for the past year on New Zealand’s first Rare Disorders Strategy to address the inequitable health outcomes for those affected by rare disorders, the rare disorder community has not once been mentioned as a priority population group in a recently released cabinet paper on the Minister of Health’s vision for primary and community healthcare in Aotearoa.
Rare Disorders NZ is extremely frustrated that the Government is scrapping all remaining COVID-19 restrictions while Pharmac is still in the process of deciding whether to widen the access criteria for COVID-19 antivirals.
Rare Disorders NZ Chief Executive Chris Higgins and Board Chair James McGoram had a constructive meeting with Minister of Health Hon. Dr Ayesha Verrall in June; the first between Rare Disorders NZ and the new health minister.
Rare Disorders NZ is deeply frustrated that only minor amendments have been put forward by the Social Services and Community Committee to the Accessibility for New Zealanders Bill, ignoring the many concerns raised about the bill by the disabled community, including Rare Disorders NZ, during the select committee process.
Rare Disorders NZ has written to the Minister of Health asking her to urgently look into why no progress has been made to include spinal muscular atrophy (SMA) in the newborn screening programme, despite Pharmac approving two life-saving therapies for pre-symptomatic treatment of the degenerative disease.