Rare Disorders NZ: August update
"When I was growing up, I didn’t think of myself as being any different to other children until I went to intermediate."
Fair for Rare NZ: Chief Executive's update
Life is full of uncertainty and change, with additional pressure on people living with rare disorders due to the shifting COVID-19 alert levels. Reaching out to others can really help and the value of our collective community holding strong together has never been so important. We want you to know that the team at RDNZ is ready and remain here to support you and link you to useful information. Please email or call us 04 3851119 with any concerns and we can share these with Ministry of Health or others to gain answers where possible. There are also some great practical resources with wellbeing ideas and links which are available through the Mental Health Foundation.
We know from our connections with the international rare disease community, that the COVID-19 pandemic has exacerbated the many challenges people living with a rare disease already face and has created extra risks in their daily lives, with collateral consequences.
One positive element from this intense time has been increased connection across agencies, charities, partner organisations, and to key Ministry contacts. This has allowed Rare Disorders NZ to develop clear channels for sharing of information from our community so we can ensure issues are voiced and included. We also have continued quarterly meetings with Ministry of Health with our next meeting on 1 September and will continue to raise key factors, possibilities and concerns.
If New Zealand had clear acknowledgment of people living with, and caring for, those with rare disorders and a National Framework and action plan, at least we would have assurance of the intention of inclusion in recovery planning. Te Mahere mō te Mate Pukupuku o Aotearoa 2019–2029 (NZ Cancer Action Plan) provides a pathway to improve cancer outcomes with system improvements and clear expectations. We are asking for the same fairness for rare health conditions and to be recognised as a group with key vulnerabilities, common challenges and needs. We want our collective voice to be heard, therefore our Fair for Rare NZ campaign is more important than ever!
We now have more than 3,600 signatures for our collective Parliamentary Petition. Help us make a difference for those living with rare disorders by sharing and signing it!
Fair for Rare NZ campaign
Our collective campaign for a National Rare Disorder Framework has been gaining momentum and attention.
- Parliamentary Petition
RDNZ has made the decision to extend the Petition until April 2021; we are working on an extended project plan to include Rare Disease Day events in February. Please continue to share the Petition with your networks.
- MP liaison programme
A huge thank you to the more than 20 people living with a rare disorder from around NZ who have met with their local MPs to share their experience of why the government needs to develop a National Rare Disorder Framework. RDNZ will follow up with these connections.
- Election Manifestos
RDNZ asked all the major political parties for their commitment to the strategic priorities within the National Rare Disorder Framework. Disappointingly, only three parties - Greens, National and Labour - responded to our collective request for a stance on the issues important to the rare disorder community. RDNZ will continue to speak to policy makers about these priorities in the leadup to the election in October.
Medicines NZ Parliamentary Dinner
Last night RDNZ Chief Executive Lisa Foster attended the annual Medicines NZ dinner at Parliament. This was an opportunity to meet with policymakers and ensure the collective voice of rare disorders is included within the solutions proposed to address medicine inequity.
Lisa took the opportunity to speak with Minister of Health Chris Hipkins (pictured), and secured a meeting with Associate Health Minister Julie Anne Genter. Read Lisa's report on our website.
Rare diseases - is something so common really so rare?
"In an information-rich world, filters and perspective are key to making informed and supported decisions. For our patients, living with a rare condition in a sparsely populated country like NZ, the cohesion and value-add that organisations like RDNZ bring must be celebrated, supported and grown."
Curekids Professor of Paediatric Genetics at the University of Otago (and Board member of RDNZ) Stephen Robertson has written an article for GP Pulse magazine.
Circulated to 5,500 GPs, this article talks about the importance of support groups and organisations like RDNZ in helping patients to improve their health and wellbeing.
Read the full article here
Endorsement from the Royal NZ College of GPs
Last year's NZ Voice of Rare Disorders survey highlighted the need to implement patient-centric coordinated models of care for a better quality of life for people with rare disorders. RDNZ has been working to strengthen our relationships with health professionals, and are pleased to announce that we recently received endorsement from the Royal NZ College of GPs.
Read the endorsement letter on our website