Ken Young was diagnosed with polycythaemia vera over 20 years ago. At the time, he had never heard of myeloproliferative disorders. Like many, he took to the search engines and quickly realized that there was little Australian based information. Ken set out to rectify the situation by establishing the MPD-Oz email list in September 1998, which has close to 200 subscribers. He has had a long and productive association with the Leukaemia Foundation (LF) since 2000 with many MPD-Oz list members contributing to the first edition booklet on myeloproliferative disorders. In 2015, Ken, along with several others living with MPNs formed the MPN Alliance Australia (MPN AA), with goals of increasing community awareness of MPN, educating and supporting the MPN community, raising funds for MPN research and advocating for Australians with MPN. He volunteers for the MPN AA to promote wider understanding of these rare diseases, to support patients and care partners to find treatment that will one day cure these blood cancers.