Dialog Box

Loading...

RVA Board of Directors & STAFF

BOARD OF DIRECTORS

 

 

 

 

 

 

Joanna Betteridge BA, LLB, LLM, GAICD

CHAIR, 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 the immediate past 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

DEPUTY CHAIR, Rare Voices Australia (WA)

Kane is a senior executive with the Western Australian Government at the Insurance Commission, which provides injury and liability insurances, and related investment functions. Prior to the public sector, Kane worked in various Australian and international resource companies and in private equity. Kane is a non-executive director of Therapy Focus, the largest provider of therapy services to people with disability in WA. He is a member of the WA Minister for Health’s Precision Health Council, the WA Minister for Disability’s Advisory Council, and a deputy member of the WA Minister for Road Safety’s Council. Kane is also a State Committee member of the Governance Institute, a lecturer in corporate governance and a chartered company secretary. Kane has a son with Angelman Syndrome and is the Deputy President of the Angelman Syndrome Association Australia. Kane is also the Chair of RVA’s Nomination Committee.

 

 

 

 

 

 

 

 

 

 

 

Raymond Saich OAM

Director, Rare Voices Australia (NSW)

Raymond is the President of the Australian Pompe Association and a Director of the International Pompe Association. He is a Pompe patient and started treatment for his Pompe disease with enzyme replacement therapy in 2007 and is now one of the longest treated Pompe patients in Australia. Raymond has been a strong advocate for people living with a rare disease since receiving his diagnosis in 2002. Prior to retirement, Raymond was a senior manager with an Australian multinational diagnostic imaging company and played a major role in the introduction of both CT and MRI scanning in Australia.

 

 

 

 

 

 

 

 

Robert Hendriks MD, MBA, GAICD

Director, Rare Voices Australia (NSW)

Robert Hendriks graduated as a Medical Doctor from the University in Amsterdam and as a Master of Business Administration in Rotterdam. Robert has over 20 years’ experience as an international senior executive in the Pharmaceutical, Biotech, Natural Medicines and Medical Devices industries and currently is the Chief Executive Officer of global healthcare company SFI. Robert’s connection with rare diseases began in 2010 in his role as Managing Director of a pharmaceutical company that pioneered the development and delivery of therapies for patients affected by rare diseases. Robert worked with the Department of Health and Ageing to ensure patients have access to the products needed to treat their rare diseases. He is also a graduate of the Australian Institute of Company Directors.

 

 

 

 

 

Dr Carol Wicking

Director, Rare Voices Australia (QLD)

Dr Carol Wicking received her BSc (Hons) and MSc from the University of Melbourne and her PhD from the University of London. She has over 25 years' worth of research experience, primarily investigating the molecular and cellular basis of a number of rare diseases including cystic fibrosis, naevoid basal cell carcinoma syndrome and a class of rare diseases known as ciliopathies. Carol is a past President of the Australian and New Zealand Society for Cell and Developmental Biology and current Chair of the Board of Phenomics Australia. She is currently an independent consultant and an Honorary Associate Professor at the Institute for Molecular Bioscience at the University of Queensland. Carol is also the Chair of RVA’s Scientific and Medical Advisory Committee.

 

 

 

 

 

 

 

 

 

 

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.

 

 

 

 

 

Viswanathan Narayanaswamy (Vishy)

Director, Rare Voices Australia (NSW) 

Vishy is a Chartered Accountant by profession and has over 18 years of experience in accounting, auditing and taxation. Vishy is a member with the Institute of Chartered Accountants of Australia and New Zealand and the Institute of Chartered Accountants of India. He is currently working as a senior manager in a public accounting firm in Sydney. Vishy will be supporting the Board with finance and accounting related matters. Vishy was diagnosed with PNH disease, a rare blood disorder in 2008 and is receiving treatment since then.

 

 

RVA STAFF

 

 

        

Nicole Millis

Chief Executive Officer, Rare Voices Australia (VIC)

A qualified social worker, Nicole has both personal and professional experience in the rare disease sector. Nicole has over 12 years’ worth of experience in rare disease advocacy, particularly in regard to access to treatments. Since 2018, Nicole has held the role of consumer nominee on the Life Saving Drugs Program Expert Panel. Under Nicole’s guidance, RVA led the collaborative development of the National Strategic Action Plan for Rare Diseases, the first nationally coordinated effort to address rare diseases in Australia.

 

 

 

 

 

Louise Healy

Stakeholder Engagement and Education Officer, Rare Voices Australia (QLD) 

Louise has post-graduate qualifications in psychology and has managed a consulting business for the past seven years. Her connection with rare conditions began when her first child was born with a rare metabolic disorder. Louise has been involved in rare disease support and advocacy for over 10 years and she is the current Vice President of the Metabolic Dietary Disorders Association (MDDA). She has led successful advocacy campaigns for access to medicines and support programs for people with rare disorders of protein metabolism. Louise is a previous RVA Board member, current member of the Queensland Genomics Community Advisory Board and a founding board member of the Global Association for PKU.

 

 

        

 

Sarah Cannata

Communications Officer, Rare Voices Australia (VIC)

Sarah Cannata is a passionate storyteller, a qualified journalist, a Public Relations consultant and has over 10 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.

 

 

 

 

   

Anne Hunter

Administrative Officer, 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 living with Fabry Disease and caring for a child with a very rare disease. Anne is also on the Fabry Australia committee.