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

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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

Aug 19, 2020, 4:35 PM
Rare Disorders NZ: August update

In this issue: • Rare is everywhere: meet Roger • Fair for Rare NZ: Chief Executive's update • Fair for Rare NZ campaign • Medicines NZ Parliamentary Dinner • Rare diseases - is something so common really so rare? • Endorsement from the Royal NZ College of GPs

Jun 16, 2020, 6:49 PM
Rare Disorders NZ: June update

In this issue: • Rare is everywhere: meet Lizzie • Fair for Rare NZ: Chief Executive's update • Parliamentary Petition • MP Liaison programme • Election Manifesto • Have your say: a new generation medicines policy • International connections

Apr 15, 2020, 4:14 PM
Rare Disorders NZ: April update

In this issue: • Rare is everywhere: meet Susan • Chief Executive's update • COVID-19 - Resilience webinar and other resources • Fair for Rare NZ campaign launch • Fair for Rare in the media • NZ Voice of Rare Disorders White Paper • International connections strengthened