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.
