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.
"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.
OVERVIEW This webinar will focus on guidance around managing pain for people living with chronic health conditions.
This document outlines the campaign goals and will be endorsed by our collective and partners.
Last week Dr Buzz Burrell hosted a webinar focusing on managing pain for a person's own chronic health condition or on behalf of someone they support.
Rare is everywhere: meet Allyson"I want things to be so much better than they were when I was diagnosed." Fair for Rare NZ: Chief Executive's updateNow the 2020 election is over and New Zealand has a new government, with a promise to be a party that governs for every New Zealander, there is hope for acknowledgement of the common challenges, the opportunities for equity and inclusion of people with rare conditions.
I have rare health conditions named vascular Ehlers-Danlos syndrome and cerebral cavernous haemangiomata.
Rare Disorders NZ hosted a stand at the New Zealand Respiratory Conference at Te Papa last week.
My son, Carsen, had an intra-cardiac fibroma, a rare condition which is basically a benign tumour within the heart which can impact on blood flow.
Here are some resources created for people living with a rare disorder and their family by Rare Disorders NZ and our expert advisers.