Rare Disorders NZ: August update
"We all just assumed that New Zealand would follow suit and were devastated when PHARMAC decided to defer their decision."
Equity for rare: editorial
Happy (almost) Spring everyone!
I am thrilled and humbled to be Chief Executive for Rare Disorders NZ and offer my wholehearted intention to amplify the voice of all people living with, and impacted by, a rare disorder in New Zealand.
We recently spoke directly with both the Minister of Health and our Ministry funders about our declining contract, which is down to half next year. We reflected the needs, collective strength and potential solutions that could improve health journeys and outcomes for the rare disorder community. This included timely diagnosis, access to medicines, carer support, research and access to support services as part of the issues facing the rare disorder community. The Minister acknowledged these challenges and stated his plan to speak with Australian Federal Health Minister Greg Hunt to learn about their rare disorder framework and action plan. We explained we are keen to work with the government to support systemic change that offers truly integrated healthcare. We will keep you all informed including our next steps once a clear signal is provided.
Our focus is to continue to ensure people with rare disorders are not left behind or forgotten in the current health debates. A cohesive approach must include all rare disorders, alongside that of other conditions such as cancer, and be based on need not on a diagnosis or condition alone. With this aim we have aligned with Patient Voice Aotearoa to ensure the petitions for rare disorders SMA, Pompe and Fabry are well supported. Sadly, there has been much heartache created by recent disrespectful media articles and we hope knowing no one is in this journey alone can bring comfort during this time.
We had our quarterly meeting with PHARMAC this week with a clear focus on including patient voices in decision making. We also recommending setting up an engagement meeting with the rare disorder community to hear views directly.
For further updates keep a close eye on our website and please join the conversations on our Facebook page.
Ngā mihi nui,
Meeting with the Minister of Health
On Wednesday 7 August our CE Lisa Foster and Fundraising and Communications Manager Amy Watson met with the Minister of Health and senior advisers.
It was a positive meeting and the Minister was engaged and interested in the issues facing people living with rare disorders.
We are waiting for a clear signal on our funding and support for the rare disorder community and will keep you informed.
Medicines access campaign
Rare Disorders NZ welcomes the National Party’s recent announcement on cancer care but calls on both the opposition and the coalition government to widen their medicines access proposals beyond cancer to include provision for people living with rare disorders.
“Too often New Zealanders with a serious uncommon health condition fall between the cracks and don’t get the health care they deserve,” says Chief Executive of Rare Disorders NZ Lisa Foster.
Rare Disorders NZ supports all people living with a chronic health condition who are brave enough to share their experiences with the media and through petitions to advocate for changes in the health system.
Our new Relationship Manager
We are pleased to announce that Kim McGuinness has joined Rare Disorders NZ as our new Relationship Manager. Kim has a strong background in the not-for-profit sector including as a volunteer and past board member of Cystic Fibrosis New Zealand. She has successfully built strong sustainable relationships with clinical and non-clinical stakeholders to help deliver a wide range of projects and events.
"I have a passion for helping those with chronic conditions and making a difference to people's lives," says Kim.
Kim will be connecting with all our support groups over the next few weeks.
Rare disease researchers and genetics
The second Rare Disease Researchers’ Special Interest Group meeting with 14 key researchers in the fields of rare diseases took place on 2 August 2019 in Wellington at Victoria University’s Rutherford House. RDNZ facilitated this meeting and provided the opportunity for rare disease researchers to gather, collaborate and share learnings.
The 43rd annual scientific meeting of the Human Genetics Society of Australasia took place on 3-6 August 2019 in Wellington with the theme of Winds of Change to convey the importance of new developments in human genetics and genomics.
RDNZ hosted a stall at the conference to raise awareness and network with others in the field of rare disorders, and our board member Professor Stephen Robertson gave a presentation as part of Genomics Aotearoa, a collaborative platform in New Zealand to ensure international participation in the field of genomics.
Rare Disorders NZ AGM
This meeting of Rare Disorders will take place on Thursday 26 September from 10-10.30am at our offices in Newtown.