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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

 

 

 

 

 

Associate Professor Carol Wicking

Director, Rare Voices (Qld)

 

Associate Professor Carol Wicking is currently the Manager Strategic Research Engagement at the Institute for Molecular Bioscience, the University of Queensland. Prior to this position she worked for close to 30 years in medical research, investigating the genetic and mechanistic basis of a number of rare diseases including cystic fibrosis, naevoid basal cell carcinoma syndrome and a class of rare diseases known as ciliopathies.

 

 

 

 


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.

 

 

 

 

 

 

Joanna Betteridge BA LLB LLM GAICD

Director, Rare Voices Australia (VIC)

Joanna Betteridge, Principal of Betteridge Legal Consulting, is an employment and workplace safety lawyer and consultant and an accredited mediator. Joanna is also a Senior Fellow at Monash University and lectures in its Law Faculty post graduate program including lecturing in anti-discrimination law. Joanna is Chair of the TEAR Australia Board (a global aid and development organisation) and has held a number of Board roles in a variety of not for profit and Government boards since 2003. Joanna sat for many years on the committee of the Australian MPS Society, becoming involved soon after her two nephews, Jack and Tom, were diagnosed with MPS III, Sanfilippo Syndrome, in 1998.

 

 

 

 

 

 

Kane Blackman

Director, Rare Voices Australia (WA)

Kane is a senior public relations executive with the Western Australian State Government at the Insurance Commission, which delivers personal injury and liability insurance schemes, lifetime care and an investment portfolio. He has more than 14 years' experience in the mining, oil and gas, and financial service sectors, and is a Charted Secretary. Kane has previously held executive positions in communications, operations, corporate affairs and governance for a range of multinational entities. Kane is Deputy Chair of Injury Matters and sits on the Road Safety Council of WA and the WA Branch of the Governance Institute. Kane has a son with Angelman Syndrome, and is a Committee Member of the Angelman Syndrome Association of Australia.

 

 

 

 

 

 

Professor Eric Morand MBBS (Hons) FRACP PhD

Director, Rare Voices Australia (VIC)

Professor Eric Morand is Professor and Head of the School of Clinical Sciences at Monash Health, Monash University’s largest clinical school. He is also a specialist rheumatologist, and Head of the Monash Health Rheumatology Unit, the largest in Australia. He specializes in research and clinical care of systemic lupus erythematosus, as well as complex rheumatic diseases and rheumatoid arthritis. He is founder of the Monash Lupus Clinic, Australia's largest research-grounded clinic for patients with SLE, a founding member of the Australian Lupus Registry & Biobank, and Chair of the Asia Pacific Lupus Collaboration.

 

RVA STAFF

 

 

        

Nicole Millis

Chief Executive Officer, Rare Voices Australia (VIC)


Nicole Millis is RVA’s Chief Executive Officer. 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. She has significant experience in rare disease advocacy, particularly in regards to access to treatments. Nicole has recently been appointed as the consumer nominee on the Life Saving Drugs Program Expert Panel.

        

 

Sarah Cannata

Stakeholder Engagement and Communications Officer (VIC)

 

Sarah Cannata is a passionate storyteller, a qualified journalist, a Public Relations consultant and has over 7 years’ worth of experience in Communications. Sarah has extensive experience working in the not-for-profit sector thanks to her time with Campaign for Australian Aid and is committed to using her skills to benefit all Australians living with a rare disease.

 

 

        

 

Amy Mills

Social Media Officer, Rare Voices Australia (NSW)

 

Amy Mills is the Social Media Officer for Rare Voices Australia (RVA) and served as a Board member in 2015. She lives with Cystic Fibrosis and is an outspoken advocate for change within the rare disease community. Amy uses art as a way to question and express emotion about her experience of living with Cystic Fibrosis. She is passionate about informing RVA's 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.