Rare Disorders NZ: December update
"It is very scary and at times difficult trying to navigate the system."
Fair for Rare: Chief Executive's update
It has been an intensive and productive year at Rare Disorders NZ and we are finishing with a bang by launching our collective Fair for Rare campaign. This campaign is a call for acknowledgement and action to ensure people with rare disorders do not fall between the gaps, and are offered a fair go when it comes to accessing the care and supports they need.
The call is for a system that is inclusive, cohesive and functional so that uncertainties facing many people with rare disorders can be reduced or eliminated. This would be through the development of a National Framework, led by Government and with consultation with rare disorder groups, to highlight the main areas of need and offer viable solutions. Ultimately, we want an action plan for rare disorders, similar to that of other OECD countries including Australia. I do hope you can join us at the parliamentary launch of this campaign on 28 February 2020, more details below.
Thank you to everyone who took part in our Voice of Rare Disorders survey, we had an overwhelming response and are truly humbled by your honesty and openness. The survey allows your voice to be heard, and once results are analysed, can highlights key areas of need within our current healthcare and wider systems. This data is invaluable for our campaign and work to push for equitable healthcare for people living with a rare disorder and their whanau.
Sadly, we now face a significant reduction in funding from the Ministry of Health, despite an increase in overall engagement with Government, and clear UN recognition of the rare disorder global community. Although we will continue to lobby politicians for increased support, we will also be launching a fundraising campaign to ask for the public's help so we can continue to support and represent the rare collective voice.
On a more positive note, we will also be celebrating our organisation’s 20th year and would love to share this amazing achievement with the wider community so please consider attending our launch event in February.
Thank you for your ongoing support, especially at this time of year of goodwill and cheer. We express our hopes for true fairness, empathy and kindness in 2020.
Rare Disease Day 2020: Launch of Fair for Rare campaign
The board and staff of Rare Disorders NZ invite you to the Fair for Rare campaign launch for all people living with uncommon health conditions and their whanau.
Friday 28 February
2pm to 4pm
Grand Hall, Parliament Buildings, Wellington
Please RSVP using this link. Direct any questions to Susan.
Read more about the Fair for Rare campaign
National commits to ring-fenced fund for rare disorders
Our CE Lisa Foster and Nicola Swan from SWAN NZ attended the launch of National's Health Discussion document last week.
National commits to establishing a ring-fenced $20 million rare disorders fund over four years as well as reviewing criteria and formula of assessment to ensure people with rare disorders aren't overlooked (page 20).
"This is a step in the right direction and we're pleased that the rare disorder community is acknowledged in this wide-ranging document. National states they want to encourage Kiwis to live well so we will continue to push for rare disorders to be included as a key health challenge, with a clear plan to ensure equitable healthcare," says Lisa.
Read the document and provide your feedback
APARDO Regional Collaboration for Global Change Summit
Lisa Foster was an invited speaker at the Asia Pacific Alliance of Rare Disease Organisations (APARDO) summit in Taiwan last month.
"Connection and cooperation are the themes from my experience at APARDO 2019. There was a genuine and whole-hearted approach shared by all participants. Threads of shared learnings, challenges and potential solutions combined to deliver a common fabric which bound us all together despite our geographical dispersion and diversities."
Folic acid fortification
Rare Disorders NZ supports the Ministry for Primary Industries proposal to add folic acid to flour to reduce the number of babies born with spina bifida and other neural tube defects.
Read more on our website