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

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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.

Jul 1, 2022, 1:32 PM
Rare Disorders NZ: June Update

In this issue: Government commits to develop a strategy for rare disorders; The Pharmac Review; Rare Beer Challenge a huge success; Tattoo art auctioned for RDNZ; Governor General becomes patron of Rare Disorders NZ; Rare Disorders NZ's presence at the GP CME; GP Awareness video; Information packs to GPs; Global Genes Award nomination; New board member; Education highest needs review; Global conference on rare disease policy; Costello Medical Videos; Thank you to sponsors.

Apr 28, 2022, 10:52 PM
Rare Disorders NZ: April Update

In this issue: Voice of Rare Disorders White Paper launched; Raising awareness of rare disorders; Rare Disorders NZ on Nine to Noon; Trikafta Petition; Rare Beer Challenge; Education update on the Highest Needs Review; Mental Health and Wellbeing Submission; Roadside safety law could affect those with a rare disorder; Global Survey of Rare Disorder Diagnosis; Rare Disorder support groups; New private Māori Facebook group.

Mar 9, 2022, 11:29 PM
Rare Disorders NZ: February Update

In this issue: Rare Disease Day 28 February 2022; Pae Ora (Healthy Futures Bill); Rare Disorder videos at GP clinics and medical centres; Health Select Committee final response to Sue Haldane's petition; Rare Beer Challenge – Postponed; Takeda APAC Blood Summit; International Rare Disease showcase; COVID Vaccine Update