Join us in helping people who live with a rare disorder

As we approach Rare Disease Day (28 February 2021) we’re asking you to give us your support – and some money. Half of New Zealanders with a rare disorder are children, almost one third won't make it to their 5th birthday.

Carsen Coll of Christchurch died from a rare heart condition at six months old. His mother, Sheralyn Dee, believes that if the government had a National Rare Disorder Framework in place, it could have led to a different outcome for her son.

Link: https://raredisorders.org.nz/about-rare-disorders/stories-project/carsens-story/

If you have a Rare Disorder in New Zealand, you will struggle to find the right diagnosis, medication and support. Please help make this happen by donating today so we can help as many as 300,000 New Zealanders and their whanau get the help they need.

Yasha Aggarwal and Kuldeep Singh’s son has a rare form of Muscular Dystrophy. Their family continues to face many challenges in accessing care for him in Auckland because of his rare condition. With health policy that recognises these specific needs, life would be so much easier.

Link: https://www.indianweekender.co.nz/Pages/ArticleDetails/7/8644/New-Zealand/Desperate-parents-of-a-genetic-disorder-suffering-child-want-other-parents-to-r

Sue Haldane lives in Hawkes Bay and is the mother of Lizzie, who has 22q Deletion Syndrome (also known as Velo Cardio Facial Syndrome). This syndrome is a complex condition that affects the body, the blood, the brain, the mind and emotions. Sue is leading the Rare Disorders NZ collective petition to Parliament, calling for the establishment of a National Rare Disorder Framework. Rare disorders affect NZ children, families and communities – people you know. They impact our society and economy.

Link: https://raredisorders.org.nz/about-rare-disorders/stories-project/lizzies-story/

These are just three stories. We hear so many more at Rare Disorders NZ every day. That is why we need your help now to fulfil our mission: to improve healthcare and wellbeing for people and their whānau living with a rare disorder.

You might not know that as many as 300,000 people in New Zealand live with a rare disorder. Half of these people are children, many of whom will not make it to adulthood. Rare disorders impact everyone in a family, from parents who give up work to become caregivers to siblings who struggle to understand what is happening.

LIVING WITH A RARE DISORDER CAN BE LONELY AND SCARY, WITH BARRIERS AT EVERY TURN.

Furthermore, rare disorders receive less research money than more common illnesses. Treatments are expensive and many have no set treatment or medicine. When treatments are available, they are seldom funded by the government due to small population size for each disorder.

WHAT WOULD HAPPEN IF YOU HAD A LESS COMMON DISEASE? WOULD YOU GET A FAIR LEVEL OF CARE?

HOW RARE DISORDERS NZ HELPS PEOPLE:

– We offer a place of belonging and work tirelessly to connect people with links to our support groups, other families with related disorders, government or non- profit agencies or health professionals.

– We provide information on disorders, and guidance for medical professionals. We listen and amplify the voices of those with rare disorders by calling for fairer, more equitable treatment.

– We raise awareness of the range of complex conditions that are often ignored or dismissed, and work to reduce the uncertainty that causes so much stress. And we have a plan for positive change.

– We believe that New Zealand can do better as a nation with the way we provide healthcare to those with a rare disorder. New Zealander’s would be shocked to learn that we lag far behind most OECD countries in supporting people living with rare disorders and their families to access the best healthcare. Our Fair for Rare NZ campaign aims to change that and provides a clear outline of strategic priorities for a National Rare Disorder Framework; we are petitioning Parliament to reform our healthcare system urgently.

WHAT YOU CAN DO TO HELP:

We desperately need your help so we can continue this important work. Last year, our funding was reduced, even though demand for our services continues to increase. People who are suffering from a rare health condition need our help, and we need yours.

Please consider a donation - as large or small as you can afford.

We know this isn’t always possible, but even if you can’t give money, there are other ways you can help. You can share this page on your Facebook or Twitter account. You can sign Sue Haldane’s petition to Parliament. Most importantly, you can get involved on Rare Disease Day by letting everyone know that Rare is Everywhere.

https://our.actionstation.org.nz/petitions/reform-our-health-system-to-include-all-new-zealanders-living-with-a-rare-disorder

ABOUT US

Rare Disorders NZ is the connector hub and 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 six percent of the population.