March is Rare Disorders Month, and we are calling on Aotearoa to Glow Up and Show Up for the 300,000 Kiwis living with a rare disorder.
March is Rare Disorders Month, and Rare Disorders NZ (RDNZ) is calling on Aotearoa to Glow Up and Show Up for the 300,000 Kiwis living with a rare disorder.
RDNZ is the advocacy and support body for the collective rare disorder community in Aotearoa. We have made enormous strides towards making New Zealand a better place for Kiwis living with a rare disorder by getting the Government to commit to developing New Zealand's first Rare Disorders Strategy and holding them to account on this, as well as ensuring it is informed by the lived experience of patients.
In addition, just in the last year our small but high-performing team:
- launched NZ's first guide for caregivers of children diagnosed with a rare disorder;
- got Aotearoa to Glow Up and Show up for Rare during our first Rare Disorders Month campaign;
- worked with Manatū Hauora on NZ's first Rare Disorders Strategy;
- launched an insights report on rare disorders in New Zealand;
- made 14 submissions on proposed changes to policies relevant to the rare community;
- responded to over 660 enquiries;
- welcomed 14 new patient support groups to our collective of now 159 support groups.
We rely on grants and donations to carry out our work advocating for access to world-class and world-leading health, disability, education and other services.
You can #ShowUp for the rare community this Rare Disorders Month by donating to support our work to improve the health and wellbeing of people and whānau living with rare disorders in Aotearoa.
Rare Disorders NZ is the connector hub & collective voice for people affected by rare disorders and their families. We advocate for an equitable health system that works for the 300,000 Kiwis with a rare condition - around 6% of the population.
Your donation will go towards providing a place for the rare disorder community to turn to for connection, guidance, advice and resources.
We appreciate you support - thank you.
Thank you Tove - much appreciated!
Thank you Graeme!