Megan Fookes, co-founder of Rare Voices Australia was overwhelmed when she heard the news of receiving the Medal of the Order (OAM) on Australia Day. Megan has dedicated the award to her late father (who lived with the rare disease called Fabry Disease), and to all adults, children and families who are doing their very best living with rare diseases.
Megan has been working in the rare disease sector since 1999, has a personal connection with rare disease, and cares for her child who lives with the same condition. Megan served on the Board of Fabry International Network (FIN), and continues to volunteer as Director at Fabry Australia.
Megan would like to thank the many people who have personally congratulated her.
“Thank you for all the beautiful messages, emails and texts sent upon receiving my OAM. I feel quite overwhelmed. It has been such a privilege to serve in the rare disease space and not without its challenges. Advocacy/not for profit is a ‘hard gig’! As many know this is an area that is very close to my heart and my family. I would like to dedicate this award to my late father who lived with a rare disease called – Fabry Disease. I also dedicate it to all the folk (adults and children) and their families who are doing their very best living with rare diseases. RVA (Rare Voices Australia) aims to unify all these voices so that they can be heard by the leaders and politicians of our country. Wouldn’t it be great if Australia was to adopt a policy that could ensure a clear pathway to access first class health services, care and treatments without delay or obstacle? Wouldn’t it be great if Australia could have a National Strategy for rare diseases and adequate funding for health professionals to care and provide appropriate services to folk living with rare diseases? I do believe that this can happen if folk living with a rare disease make it happen. Thank you for all your support. Megan Fookes (OAM) x”