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Making the right connections since 1988

Genetic Alliance Australia is a peak umbrella group for rare genetic conditions/diseases, so rare they do not have their own support group.

Genetic Alliance Staff

Jan Mumford

Executive Director

Jan’s work with genetics and families is from the hope it offers as well as the challenges this new information gives. Jan has a varied background in large organisation in telecommunications and small business, WHS consultancy. She has recently completed a BSocSc (Sociology) to round out the background of her work. Her work with research groups to provides a community perspective, promoting the health and support needs of those affected. At the state and federal levels, Jan as worked with peak advocacy groups for improved services and provide feedback on government policy and procedures. Jan’s experience and background strengthens Genetic Alliance support for families at all stages of a diagnosis as well as a community voice at state and federal levels.

Jenny Rollo OAM

Projects Manager

Jenny has over 30 years’ experience in the disability field as Founder, and presently President, of the Cornelia de Lange Syndrome Association. She is a co-founder and the Australian representative of the International Federation of CdLS Support Groups which was formed in 2001. Locally (with other parents) she has spent the last 11+ years advocating, lobbying State and Federal politicians, planning, and designing a cluster accommodation model for RASAID (Ryde Area Supported Accommodation for Intellectually Disabled). The homes opened in April 2016. All 15 residents settled in quickly and are very happy to be living near their friends, as independently as possible.

“The joy of my life is my grandchildren, and my passions are travel and photography. I am delighted to be working with families through Genetic Alliance Australia as the Projects Manager. I hope to be able to meet many of you in person at our events this year!”

Genetic Alliance Board Members

Wendy Bruce

Executive Officer of Fragile X Association

Wendy is Executive Officer of Fragile X Association, a member-based not-for-profit organisation supporting individuals with Fragile X-associated conditions and their families. Wendy has worked with community-based support groups for a number of years, and in her early career worked with professional services firms as an information manager.

Wendy has a B Soc Sci (Lib).

Dr Jane Fleming

Lecturer & Associate Genetic Counsellor

Jane is a research manager at the Royal North Shore Hospital Department of Clinical Genetics and an associate genetic counsellor. She has an interest in inherited genetic conditions and has previous research experience studying deafness genes and gene therapy for the treatment of a neuro-degenerative condition. Jane’s research interests include personal genome testing, inherited eye conditions, prenatal testing and genetic counselling.

Kate Dunlop

Director, Centre for Genetics Education

Kate is the Director of the Centre for Genetics Education NSW Health. She has worked in education in the health setting for over 25 years and has wide experience in program management, resource development and educating health professionals as well as students, patients and the community generally. Her particular interests include familial cancer, public health genetics including family health history, screening and evaluation, and communication skills training. Kate has a BAppSc(Nurs), DipEd(Adult) and a MPH(USYD), and is a Clinical Lecturer, Sydney Medical School- Northern, University of Sydney.

Lizzy Harnett

Executive Director AWCH

Lizzy is the Executive Director for the Association for the Wellbeing of Children in Healthcare (AWCH). AWCH is a national NFP organisation of consumers and health professionals advocating for the wellbeing of children, young people and their families in healthcare.
Lizzy has a B.App.Sc (Physiotherapy) and has worked as a children’s physiotherapist in the acute, community and school based settings. In 2001, Lizzy moved from Director of Physiotherapy into health management and established the Clinical Governance Unit (CGU) at The Children’s Hospital at Westmead (CHW) where she continued as Director of the CGU until late 2013. Lizzy has a passion for partnering with consumers in improving healthcare and is on a number of state and national committees focussing on the wellbeing of children and young people.

Carolyn Shalhoub

Genetic Counsellor, Clinical Lecturer

Carolyn has been working as a genetic counsellor for 18 years and is currently the Senior Genetic Counsellor within the Department of Medical Genetics at Sydney Children’s Hospital. Carolyn works in the area of general genetic counselling, counselling people with a range of genetic disorders. She also specialises in the genetics of Cystic Fibrosis, working closely with the Cystic Fibrosis management clinic at SCH. Carolyn’s related area of interest is in the training and supervision of genetic counselling students and junior genetic counsellors. Carolyn is a Clinical Lecturer in the Master of Genetic Counselling course, University of Sydney.

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