A massive thank you to everyone who supported our organisation during our Rare Disease Day campaign last month. We created a Givealittle page featuring the story of Nicola Swan and her son James, who passed away from an undiagnosed rare condition at the age of five. Nicola, and other families, shared their stories of what Rare Disorders NZ means to them and why New Zealanders should care and give to help keep our organisation alive.

Amazingly, we raised $10,000 from this campaign, and also received funds through our Rare Beer collaboration with Fortune Favours brewery, and support from the Wellington Chocolate Factory. We are so appreciative of everyone who made the effort and sacrifice to give and we offer a sincere thank you to you all. It is uplifting and inspiring to have such support when there are so many challenges.

Even though we are the only organisation representing all rare disorders, the Ministry of Health reduced our funding to an unsustainable level and so support from the public is key to our survival.

Your donations, as well as sharing our Givealittle page with your networks, will allow RDNZ to continue our mission of improving healthcare and wellbeing for the 300,000 New Zealanders living with a rare disorder. However, we still require the Government to take us seriously and commit to having a national representation for people with rare disorders.

A special thanks to Nicola, Buzz, Allyson and Sarah for sharing their stories to assist our campaign. Alone we are rare, together we are strong.

 

Ngā mihi maioha,

 

Lisa Foster
Chief Executive

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