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RVA Patrons, Board of Directors & STAFF

 

PATRONS


 

 
   

The Hon Michael Kirby AC CMG

Founding Patron, Rare Voices Australia (NSW)

 

The Hon Michael Kirby AC CMG is an Australian jurist and academic who is a former Justice of the High Court of Australia, serving from 1996 to 2009. He has remained active in retirement: in May 2013 he was appointed by the United Nations Human Rights Council to lead an inquiry into human rights abuses in North Korea, which reported in February 2014. 

 


Dame Quentin Bryce AD CVO

Patron, Rare Voices Australia (QLD)

 

Dame Quentin Bryce AD CVO was the 25th Governor-General of Australia, holding office from September 2008 until March 2014.  She was the first woman to hold the position, and was previously the Governor of Queensland from 2003 to 2008.

 


BOARD OF DIRECTORS

 

 

 

 

 

 

 

 

 


Dr Tracy Dudding

Director, Rare Voices Australia (NSW)

 

Director and Co-Founder of Rare Voices Australia (NSW) Tracy is a consultant clinical geneticist within Hunter Genetics and the NSW Genetics of Learning Disability (GOLD) service, with 20 years of professional experience within the field of rare diseases. She sits on the Steve Waugh Foundation Medical Advisory Committee and has a personal connection with rare disease. As part of the University of Newcastle Grow-Up-Well Priority Research Centre, Tracy is passionate about promoting the importance of rare disease research.

 

 

 

 

 

 

 

 

 

Louise Healy

Director, Rare Voices Australia (QLD)

 

Louise has post graduate qualifications in psychology and runs a leadership consulting business. Her connection with rare conditions began in 2007 when her first child was born with a rare metabolic disorder.  She is the current Vice President of the Metabolic Dietary Disorders Association and has been involved in managing advocacy and wellbeing programs to support members of this organisation since 2012.

 

 

 

 

 

 

 

 

 

 

 

 

 

Raymond Saich, OAM

Director, Rare Voices Australia (NSW)

 

Raymond is the President of the Australian Pompe’s Association and is also a Pompe patient. Raymond was diagnosed with Pompe disease, a rare lysosomal glycogen disorder in 2002 and has been receiving treatment since 2007. Prior to retirement Raymond was a national service manager in the Medical Imaging industry.

 

 

 

 

 

 

 

 

Robert Hendriks

Director, Rare Voices Australia (NSW)

Robert Hendriks is the General Manager Asia and Chief Marketing Officer of healthcare company SFI.  Robert has over 15 years’ experience as an international senior executive in the Pharmaceutical, Biotech, Natural Medicines and Medical Devices industries.  Robert’s connection with rare diseases began in 2010 in his role as MD of a pharmaceutical company that pioneered the development and delivery of therapies for patients affected by rare diseases.  Robert has worked with the Department of Health and Ageing and the Life Saving Drugs Program to ensure patients have access to the products needed to treat their rare diseases.

 

RVA STAFF

 


       

Nicole Millis

Executive Officer, Rare Voices Australia (VIC)

 

Nicole Millis is a qualified social worker with a background in families, disability and program management; and previously the National Manager of MPS & Related Diseases Society Australia. Nicole has both personal and professional experience of the rare disease sector.

 

 

 

 

        

 

Amy Mills

Social Media Officer, Rare Voices Australia (NSW)

 

Amy is a part time student completing her degree in Fine Arts at UNSW Art & Design, majoring in Sculpture, Performance and Installation. Amy uses art as a way to question and express emotion about her experience of living with Cystic Fibrosis.  Amy works part time as the Social Media Officer for RVA, informing the RVA rare disease community and encouraging community collaboration and connection.

 

 

 

   

Anne Hunter

Administrative Support, Rare Voices Australia (VIC)

 

Anne works part time for RVA as the Administrative Officer and is based in Victoria. Anne has a personal connection with a rare disease caring for a child, mother, sister with a very rare disease.