Bi-monthly news and views from the connector hub and collective voice of rare disorders in New Zealand.

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Mar 26, 2024, 12:29 PM
Rare Disorders NZ: February Update

In this issue: Rare Disorders Strategy Update; Glow Up and Show Up for Rare this March; Get Involved and Show Your Support; Help Us to Achieve Great Things for Rare; Rare Disorders Month Events; New Contact Details; Thank you

Dec 22, 2023, 3:59 PM
Rare Disorders NZ: December update

In this issue: Key achievements in 2023; Record responses for our Voice of Rare Disorders Survey; Rare Disorders Strategy update; Rare Disorders NZ has developed a proposal for a Rare and Undiagnosed Disorders Centre of Expertise; Cross-party parliamentary group on rare and undiagnosed disorders; Rare Disorders Month 2024; RDNZ welcomes resignation of Pharmac Chair; Submission to Pharmac on Proposal to fund supplements for phenylketonuria; Wellington support group lead catch-up; Rare Disorders in the Media.

Oct 30, 2023, 10:13 PM
Rare Disorders NZ: October Update

In this issue: Take our Voice of Rare Disorders Survey today! Rare Disorders NZ supports the My Life Matters campaign; Rare disorders omission from cabinet paper concerning; Rare Disorders NZ calling for the removal of the Chair of Pharmac; RDNZ and Whānau Āwhina Plunket collaborate on rare disorder training video; Improving access to Work and Income support for people living with a rare disorder; RDNZ submission on draft statement on disclosure of harm following an adverse event; Therapeutic Products Act; Gearing up to Glow Up and Show Up for Rare Disorders Month 2024; Rare Disorders in the Media; Thank you.

Aug 28, 2023, 12:43 PM
Rare Disorders NZ: August update

In this issue Have your say on New Zealand’s first Rare Disorders Strategy!; Working with Te Aka Whai Ora to ensure the voice of Māori included in strategy development; Response to the Ministry of Health's initial Rare Disorders Strategy document; Meeting with the Minister of Health; Rare Disorder Centre of Excellence - a solution to improve health equity?; Accessibility for New Zealanders Bill; Submission on Pharmac’s proposal to widen access to COVID-19 antivirals; COVID-19 restrictions lifted too soon, says Rare Disorders NZ; Where do the political parties stand in 2023?; Enlighten your local MP on the challenges of living with a rare disorder; In the media; Thank you; How you can help us help those with rare disorders across New Zealand.

Jun 24, 2023, 11:05 AM
Rare Disorders NZ: June update

In this issue: Berl report launch; Questions in the House; Rare Disorders NZ at GPCME; Nurses webinar; Election 2023; The Therapeutic Products Bill protest; Supporting the urgent call for newborn screening of SMA; Rare Disorders NZ proposal for a definition of a rare disorder; In the media; Thank you; How you can help us help those with rare disorders across New Zealand.

Apr 27, 2023, 11:01 PM
Rare Disorders NZ: April update

In this issue: Inaugural Rare Disorders Month a success!; Raising a child with a rare disorder: A guide for parents and caregivers living in Aotearoa New Zealand; . Celebrating rarity at the Rare Beer Challenge; Global nursing network on rare diseases; Embedding the rare voice in our future health system; Update on the progress of the Rare Disorder Strategy; Rare Disorders NZ’s statement on Pharmac’s response to the Pharmac review; Submissions by Rare Disorders NZ in first quarter of 2023; Welcome to Lewanna, RDNZ Navigator; In the media; Thank you; How you can help us help those with rare disorders across New Zealand.

Feb 14, 2023, 12:21 AM
Rare Disorders NZ: February Update

In this issue: Rare Disease Day 28 February and Rare Disorders Month March 2023; Tattoos; Paintvine; Rare Beer Challenge 2023; How can you help?; Parent Guide Launch; Submission: precision health consultation; Trikafta Submission for people with cystic fibrosis (CF); Pharmac has announced that it is reviewing rule 8.1b of the Pharmaceutical Schedule; COVID-19 Antivirals; Patient Voice Aotearoa; In the media; How you can help us help those with rare disorders across New Zealand; Looking Ahead; Thank you

Dec 19, 2022, 9:57 PM
Rare Disorders NZ: December Update

In this issue: Announcing Rare Disorder Month 2023; Reflecting on the year that’s been; Petition on Pharmac’s review of rule 8.1b handed over at parliament; Manatū Hauora National Strategy for Rare Disorders Meeting Update; Rare Disorder Support group lead Hui; New Zealanders affected by rare disorders share their struggles with education system at international UN-agency meeting; Life-saving drug Trikafta to be funded for those with cystic fibrosis; Major overhaul of special education system announced; Spinraza to be funded from 1 January 2023; Precision health - Manatū Hauora’s proposed topic for first Long-term Insights Briefing; How you can help support our work; Thank you; Join us on social media.

Dec 19, 2022, 9:53 PM
Rare Disorders NZ: November Update

In this issue: Rare Disorders NZ and Costello Medical Roundtable; Accessibility for New Zealanders Bill; Win for Spinal Muscular Atrophy Community; Neurological Alliance Letters; New Zealand Selected for International Rare Disease Study; Health Quality and Safety Commission Consumer Code; Spotlight on the Board of Trustees; Rare Disease Day 2023; Save the Dates; How You Can Help; Join us on Social Media; Thank You to Sponsors.

Aug 27, 2022, 10:43 PM
Rare Disorders NZ: August Update

In this issue: Initial meeting with Ministry on new National Strategy for Rare Disorders; Rare Disorders NZ response to latest Pharmac update on Trikafta assessment; Helping GPs become more ‘Rare Aware’; Collective continues to grow; Video in GP clinics; Wellington Airport Regional Community Awards; Cycle success for Fragile X and Rare Disorders NZ; One Percent Collective; Thank you to sponsors.