Rare Voices Australia: Working to Make it Fair for Rare

The burden of rare disease remains unacceptably high according to one national organisation fighting for the rights of nearly 2 million Australians in this category. 

Rare Voices Australia CEO Nicole Millis explains the progress being made towards addressing the inequality in the health system – effectively making it ‘Fair for Rare’.

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‘Orphan’ Rare Diseases Focus of New Federal Government Support Plan

The federal government will establish Australia’s first National Rare Diseases Framework and Action Plan to support people with rare conditions such as Batten disease, muscular dystrophy and mitochondrial disease.

Advocacy group Rare Voices Australia (RVA) will receive $170,000 to develop the action plan, Health Minister Greg Hunt will announce at the 2018 Rare Diseases Summit in Melbourne on Friday.

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An Article on Rare Diseases – by Associate Professor Carol Wicking

Associate Professor Carol Wicking is a biomedical researcher at The University of Queensland’s Institute for Molecular Bioscience (IMB), Director of the IMB Centre for Rare Disease Research and a member of the Scientific and Medical Advisory Committee of Rare Voices Australia.

“Change is in the air for rare diseases;  change that is driven by technological advances that allow scientists to sequence every gene or in some cases every one of the 3 billion base pairs that make up our DNA.”

Associate Professor Carol Wicking highlights the importance of genetic diagnosis and how it can provide hope in moving toward improved treatment and tailored disease management, as well as provide researchers with the clue they need to move towards new therapies.

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Rare Disease Articles – Australian Family Physician

Rare Voices Australia is thrilled to see the Australian Family Physician (published by The Royal Australian College of General Practitioners) focus on Rare Diseases, unexplained illness, cancer of unknown primary and advocating for patients. Falling through the cracks September 2015 Vol 44 (9) 609-688 – RVA will highlight a few here but encourage you to take time to read the full edition of the September issue of  Australian Family Physician, 2015 Vol 44 (9), pages 609-688, which focuses on Rare Diseases.

Falling Through the Cracks – Rare Diseases are a ‘common’ problem for clinicians (Volume 44, No.9, September 2015) written by Elizabeth Elliott and Yvonne Zurynski of the Australian Paediatric Surveillance Unit and Yvonne is a member of RVA’s Scientific Medical Advisory Committee (SMAC). The publication talks to the important role GPs play in healthcare delivery for people living with a rare disease and their families, especially in care coordination, preventive care and enhancing quality of life. GPs should be an integral part of any initiatives undertaken nationally to improve the diagnosis and management of rare diseases. To read the full article, click here.

‘A Powerful Team:  The Family Physician Advocating for Patients with a Rare Disease’ (Volume 44, No. 9, September 2015) written by Tracy Dudding (Consultant Clinical Geneticist, Hunter Genetics & NSW Genetics of Learning Disability (GoLD). This article outlines the challenges faced by the rare disease community, and the role of the primary care physician to advocate for answers as their patients transition through the healthcare system. To read the full article, click here.

‘Supporting Patients with a rare disease’ (Volume 44, No.9, September 2015) written by Valmae Ypinazar Dip Teach, BEd (Hons), PhD,Senior Research Fellow, School of Medicine, Griffith University, QLD Valmae has both a personal and professional connection with rare disease. Her article shares a personal perspective, caring for her son diagnosed with a rare disease; primary sclerosing cholangitis (PSC). It outlines the challenges patients (and caregivers) often face following diagnosis including lack of information and how parents / patients are forced into a role of becoming ‘expert’ in their disease and the importance of nurturing their relationship with their GP.  To read the full article, click here.