Rare Beer
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Evie
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WEBINAR: Rare disorder support group advocacy training
"Alone we are rare, together we are strong" OVERVIEW This advocacy webinar will: - give your support group tools to guide your advocacy for systemic change; - empower your support group to understand how to build coalitions and gain support for the collective Fair for Rare NZ campaign; - cover best practice for developing your own advocacy strategy; - include case studies of success and failure: what works well, where it can go wrong and why.
Fair for Rare NZ - Town Hall Meeting
Meet candidates from each of the political parties and ask your questions, in person, about how they'll make NZ more 'fair for rare'.
APARDO
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WEBINAR: Finding a needle in the haystack: a genetic diagnosis for a one-in-a-million condition
OVERVIEW This webinar will: - give a basic introduction into different forms of genetic disease - briefly describe the new technologies that now exist, eg genome sequencing - briefly cover the analysis steps researchers use to narrow their search - share how researchers connect with other labs from around the world to find more patients and build genetic evidence - share an interesting example from the research team Host: Dr Louise Bicknell Dr Bicknell leads a research team at the University of Otago, where they are interested in how genetic markers can influence our development and lifetime health.
Carol-Anne's story
In 2009, I gave birth to my third child and within months of her birth I became very ill with what I initially considered to be a stomach bug.
Rare Voices Australia: report launched
On 17 October 2019, Rare Voices Australia launched the report, Disability & Rare Disease: Towards Person Centred Care for Australians with Rare Diseases, at Parliament House.
Donate 2
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Mental Health Inquiry 2018 NZORD submission
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