Louise is the mother of Isabelle, a 3-year old who lives with a rare condition called Severe Combined Immune Deficiency ("SCID" or the "Bubble Baby condition"). SCID babies are born without a functioning immune system and cannot fight off even the simplest viruses or infections. After Isabelle survived her life-saving Stem Cell Transplant at 7 months old, Louise went on to join the campaign to successfully advocate for SCID to be added to Australia’s Newborn Bloodspot Screening Panel.&n...

Claire Devine is a best selling artist and emerging ecommerce/personal branding authority. Her works are collected worldwide and she imbues business and art with heartfelt candour, compassion and kindness. The Granddaughter of celebrated French artists and potters, Claire was born in Toulouse, France and grew up in an art gallery space in Brisbane, Australia. A classical musician and high school teacher, she started painting as a way to pass the evening hours while her handsome Irish husband,...

Geoff is a dad, husband, blogger, public speaker and an active patient advocate. Since being diagnosed in 2014 with the terminal blood cancer multiple myeloma, Geoff uses this adversity as a means to lead by example in helping others to become empowered with the challenges that they may face. His advocacy includes working as a volunteer for Peter MacCallum Cancer Centre, Snowdome Foundation, the Walter and Eliza Hall Institute of Medical Research and Myeloma Australia. In addition...

Ashley is a diabetes advocate, researcher and healthcare professional. Through her lived experience, she's developed a passion for driving patient-centred healthcare service design and ensuring the lived experience voice is involved from conception to research and health service delivery. Ashley has been part of global diabetes advocacy efforts to amplify the voices of the diabetes community, which led to being awarded the Medtronic Bakken Invitation Award in 2019 and the Diabetes Victoria Ou...

Kate Gough is a passionate advocate and parent, dedicated to raising awareness and heralding improvement for those who are born with Spinal Muscular Atrophy (SMA) and their families. As the mother of baby Oakley, who was diagnosed with SMA at eight weeks old, Kate brings a personal perspective to her advocacy work, striving to improve the lives of those with SMA and their families by calling for research and treatment advancements, as well as directly bringing about change by advocating for a...

Clare Stuart is the Policy and Advocacy Manager for the Mito Foundation, advocating for improvements to healthcare, disability and social support for people living with mito. She holds a Masters in Public Health and has contributed to policy development at NSW Ministry of Health and managed an Australian rare disease organisation. Clare played a key role in the foundations of Rare Voices Australia, and was also a steering committee member for the National Strategic Action Plan for Rare Diseas...

Nicole is a patient advocate and health consultant. When she was diagnosed with advanced bowel cancer in March 2017, she was told she would likely die within two years. Nicole then sought a second opinion, and found another medical team who were prepared to think in an innovative and personalised way about her health. Four years later, Nicole has had amazing results! When not in treatment, Nicole is challenging our health system to work collaboratively, think bigger, and be accountable for th...

Tanya is the CEO and founder of Hearts4Heart, which she founded in 2011 through her own experience of living with heart disease. Hearts4Heart is a national organisation supporting educating and advocating for patients living with heart disease. Through Tanya’s commitment and advocacy, Hearts4Heart has grown exponentially and is now seen as an expert voice in the field of patient education and support for heart disease, including arrhythmias. Following the success in Australia, Hearts4Heart ha...

After Agnes' daughter was diagnosed with sickle cell disease at 14 months old, she learned everything she could and soon discovered the limited treatment options that patients had access to. Since then, she's become an advocate for sickle cell patients. With each person that's diagnosed having such a different experience with the disease, Agnes knew that greater knowledge and information was needed as much for patients as for their families.

With Rare Disease Day coming up on the 28th of February, The Patient Voice Podcast is proud to share Rachael Casella’s story. Rachael is a campaigner and activist for genetic carrier screening, IVF education, and reproductive health. After losing her daughter Mackenzie at just 7 months old to spinal muscular atrophy type 1 (SMA), Rachael realised that genetic carrier screening could have identified the risk of this sooner, if only it had been offered to her and her husband during her pregnan...

Lisa was diagnosed with lung cancer soon after the birth of her second child in 2014. At the time, she joined a clinical trial to treat her lung cancer. After being aware of the limited options and access to treatments for lung cancer patients in Australia, Lisa began to work with the major players in the field, and advocate for access to medicines. She met with the federal health minister in 2016, created a tip sheet to help patients with their submissions about accessing medicines, and has ...

Alex Parker was born in country Victoria and diagnosed with Cystic Fibrosis at 6 weeks of age. She had a very normal childhood despite all the rigorous health routines to maintain her health. But in her early 20s, her health started to deteriorate and she was in and out of hospital with lung infections. The future looked bleak until she was able to access an innovative new medicine. However, she was only able to access it thanks to the generosity of her grandfather. So Alex and her family wor...