The second Rare Disease Researchers’ Special Interest Group meeting with 14 key researchers in the fields of rare diseases took place on 2 August 2019 in Wellington at Victoria University’s Rutherford House. RDNZ facilitated this meeting and provided the opportunity for rare disease researchers to gather, collaborate and share learnings.

Dr George Slim attended as a representative from the Office of the Prime Minister’s Chief Science Advisor and explained the focus on enabling rigorous, transparent, accessible and inclusive principles for science. The importance of acting as a trusted, accessible bridge between scientists, society and government was highlighted.

The range of research presented at the meeting included lysosomal dysfunction, genetic coding and regulation dynamics (untangling the mechanisms underlying rare and common diseases), Huntington’s disease and diagnostic challenges.

The next Rare Disease Researchers’ SIG will take place in Auckland in 2020, hosted by Dr Justin O’Sullivan at the University of Auckland.

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