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

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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

Feb 23, 2022, 2:44 PM
Rare Disorders NZ: December Update

In this issue: Global Recognition of Rare Diseases at United Nations; Pae Ora (Healthy Futures) Bill; Submission to the Health Select Committee; Voice of Rare Disorders Survey 2021; Open letter to the Government to establish an innovative acceleration fund for PHARMAC; SMA takes centre stage at United Nations event; International Children’s Day; Rare Beer Challenge – 25 February 2022; COVID Vaccine Update.

Oct 13, 2021, 10:12 AM
Rare Disorders NZ: October Update

In this issue. International Children's Day Competition, Health Select Committee Hearing, Wellington Rare Disorder Catchup, The Medicine Gap, COVID Vaccine Update

Aug 2, 2021, 1:48 PM
Rare Disorders NZ: August update

In this issue: • Rare is everywhere: meet Prerna • Fair for Rare NZ: Chief Executive's update • PHARMAC Review panel presentation • Governor-General patronage • Disability Rights Commissioner meeting • Disorders not so rare: awareness article • Government to mandate folic acid in flour • Ministry of Health meeting: raising awareness of rare disorders

Jun 24, 2021, 4:20 PM
Rare Disorders NZ: June update

In this issue: • Rare is everywhere: meet Susannah • Fair for Rare NZ: Chief Executive's update • Letter to the NZ Ambassador to the UN • Patient Voice Aotearoa protest • PHARMAC Review: submission template • GP conference update • Tattoo art auction • Fair for Rare NZ campaign

Apr 24, 2021, 4:08 PM
Rare Disorders NZ: April update

In this issue: • Rare is everywhere: meet Flynn • Fair for Rare NZ: Chief Executive's update • Petition handover at Parliament • Meeting with the Minister of Health • Rare disorders in the media • NZ's lack of rare disorder policy highlighted at UN meeting • Fair for Rare NZ campaign next phase • Patient Voice Aotearoa petition update

Feb 22, 2021, 4:04 PM
Rare Disorders NZ: February update

In this issue: • Rare is everywhere: meet Carsen • Fair for Rare NZ: Chief Executive's update • Rare Disease Day 2021 • Fair for Rare NZ campaign • Petition handover at Parliament • Newtown Festival - volunteers needed • COVID-19 vaccinations priority list • Sick leave bill submission

Dec 15, 2020, 1:04 PM
Rare Disorders NZ: December update

In this issue: • Rare is everywhere: meet Chris • Fair for Rare NZ: Chief Executive's update • Fair for Rare NZ campaign: Petition handover • Briefing to Minister of Health • Sick Leave Amendment Bill - make a submission • Webinars for the rare disorder community • Promoting awareness of rare disorders • Share your story for Rare Disease Day

Oct 20, 2020, 3:47 PM
Rare Disorders NZ: October update

In this issue: • Rare is everywhere: meet Allyson • Fair for Rare NZ: Chief Executive's update • Fair for Rare NZ campaign • Rare disorder webinars • Human Rights Commission case against PHARMAC • Rare Disease Day 2021