Radio Rare is a podcast that shares the stories of those in and around the rare and less common cancer community.
Being diagnosed with a rare cancer doesn’t mean you’re alone and Radio Rare will dive into the human stories of the rare cancer experience, the innovation, and the advocacy. Addressing the feeling of isolation experienced by so many, we look to create a connected community of those affected by rare and less common cancers.
Listen to our latest episode
Episode 21: Rare Cancers Australia CEO, Richard Vines
For our final episode of Radio Rare, we chat to Rare Cancers Australia (RCA), CEO, Richard Vines as he pulls back the curtain and talks about how RCA came to be and why the need is so great.
All clips in this episode can be found in Season One of Radio Rare.
Today's episode is sponsored by Care Connected
Episodes are released every Tuesday at 9:30 am and are available above. You can also listen on Apple Podcasts, Spotify, and Google Podcasts. Follow and listen for free.
Listen to previous episodes using the drop-down episode menus.
Episode 20: Carer, Ben McGuire
Ben shares the heartfelt cancer journey of his family, when his wife Donna was first diagnosed with a rare cancer. He recounts from the time of the first biopsy, through the ups and downs that no-one sees coming.
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Episode 19: Patient, Hosam Ehdeyhed
Hosam is a father of 3 and a dentist by career. In 2009, he was diagnosed with a rare type of brain cancer and in this episode of Radio Rare, he shares the strange experience that he had when he was first diagnosed and describes the highs and lows of his rare cancer journey.
Episode 18 - Bertalli Chair in Cancer Medicine, Professor Sean Grimmond
As precision medicine looks to provide new hope to cancer patients, we speak to Professor Sean Grimmond from the Melbourne University Centre of Cancer Research. Professor Grimmond discusses how far Genomic sequencing has come and how much further it will go.
Episode 17 - Patient and Social Justice Advocate, Julijana Todorovic
To round out Sarcoma Awareness Month we speak to Ewing Sarcoma survivor and member of the ANZSA consumer advisory panel, Julijana Todorovic. Julijana was diagnosed at the age of 22 and dives into how a cancer experience can feel as though you are at a crossroads.
Episode 16: Patient, Luke Bourne
From working in the mines in Queensland to having a life-changing CT scan which revealed a lump on the brain. Luke Bourne shares his 5-year experience of living with an incredibly rare cancer known as Alveolar Soft Part Sarcoma.
To follow Luke's journey, check out his Instagram.
Beyond Blue: https://www.beyondblue.org.au/
Episode 15: Dr Denise Caruso, CEO of the Australia and New Zealand Sarcoma Association, ANZSA
Dr Denise Caruso, CEO of the Australia and New Zealand Sarcoma Association, ANZSA, chats with Dr Emily Isham about sarcomas, clinical trials for rare cancers, and how to educate without inducing paranoia.
Episode 14: Tania Rice-Brading, Co-Founder of Cooper Rice-Brading Foundation
20% of childhood cancers in Australia are Sarcoma. Tania Rice-Brading, co-founder of the Cooper Rice-Brading foundation shares why she is passionately striving for more sarcoma research and we also hear the emotional story of who the Cooper behind the Cooper Rice-Brading Foundation is.
A note that the conversation contains stories of childhood cancer which may be upsetting for some listeners. Please reach out to your support network if you are affected or call Lifeline on 13 11 14.
Episode 13: Patient, Judi Meloni
Dr Emily Isham talks with Judi as she shares her remarkable cancer experience from the beginning of her diagnosis, what it’s like to live with a rare cancer, her close encounter with mercury poisoning, and how she has picked up the slack when it comes to finding support.
Episode 12: Patient Advocate, Jessica Bean
For Australians who need access to clinical trials and new medicines, it can feel overwhelming and impossible to know where to start. Patient advocate and founder of the Patient Voice Initiative, Jessica Bean, discusses some topics that are central to many rare diseases, not just rare cancers, clinical trials, compassionate access, and patient advocacy.
Episode 11: Medical Oncologist and a Senior Staff Specialist, Professor Bogda Koczwara
It is common to think that a cancer journey ends once a person goes into remission and it can feel as though the parade has passed by. Professor Bogda Koczwara from Flinders University talks about the true meaning of Cancer Survivorship and how Australia’s healthcare system is dealing with this phase of the cancer journey.
Episode 10: Research Director, Professor David Thomas
Professor David Thomas from the Garvan Institute of Medical Research provides a glimpse of what the future of cancer research could look like. Professor Thomas gives us an insight into the man behind the white coat, how patient experiences shape his daily work, and how molecular medicine is changing things for patients of today and tomorrow.
Episode 9: Genomics Group Leader, Dr. Richard Tothill
Dr. Richard Tothill from the University of Melbourne gives us a glimpse into the future of cancer treatments, particularly in CUP and NETS. His research in genomics is bringing cutting edge concepts to reality and we are on the cusp of a seismic shift. For this Genomics Group leader, its just another day in the lab.
Episode 8: Carer and Patient, Christine Cockburn
Christine Cockburn, Patient Support Manager here at Rare Cancers Australia shares the emotional story of caring for her mum during her cancer journey along with the roller coaster that was her own cancer journey. Christine provides insight from not only a carer's perspective but a patient perspective as well.
Episode 7: Adam Lynch, President of BEAT Bladder Cancer Australia
Adam Lynch, father of two children and founder of BEAT Bladder Cancer Australia shares the journey of his late wife Anna as she tried to overcome Bladder Cancer. Adam dives into the inspiration of founding BEAT Bladder Cancer Australia.
Episode 6: Carer, Dr. Rebecca Kelly
Scientist, advocate, mum, and caregiver Dr. Rebecca Kelly sits down with us to talk about the highs and lows of caring for her to 8-year-old son Ryan who was diagnosed with leukemia. Dr. Kelly dives into the hurdles of a new diagnosis and being able to advocate for a sick child and keep everything else moving along.
Episode 5: Psychologist, Bruce Schubert
Clinical psychologist of more than 30 years Bruce Schubert shares his observations and thoughts around the current state of physical distancing and how some are more suited to it than others. Bruce and Emily chat about what cancer patients have known for some time, that life doesn't always go the way you expected it to.
Episode 4: Carer, Simone Cloake
Often the glue that holds it all together when someone is diagnosed, is the carer. They don't sign up for the role and like the loved ones they care for - they don’t expect it. Simone Cloake tells her story of caring for her Dad after being cancer-free for 21 years and diagnosed with a rare cancer called Cholangiocarcinoma.
Episode 3: Carer, Mohab Kamel
Carers play a crucial role in a cancer patient's journey often being the anchor to everyday life. On episode 3 of Radio Rare Mohab Kamel very kindly and honestly shares the experience of his and his wife's cancer journey. Mohab also shares how he coped through financial and emotional struggles.
Episode 2: Paul Cross, BioPharma Dispatch Founder
Radio Rare episode two! Paul Cross joins us for a passionate discussion about the approval process of new therapies. Paul is a publisher and the founder of the Biopharma Dispatch. We cover a wide range of topics from the PBS (Pharmaceutical Benefits Scheme) and HTA (Health Technology Assessment), to Australia's role in the global market and Paul's views on investing in new therapies to give people more time.
Episode 1: Carer, Richard Vines
Welcome to the first episode of season 1! Dr. Emily Isham sits down with Rare Cancers Australia CEO Richard Vines. Richard discusses his role as a carer over the past 30 years, the NFP industry and how RCA was born.
Rare Cancer patients quite simply don't fit into the current health system. Radio Rare is a podcast that looks deeper into the issues that hold rare cancers back from having parity with the access, treatment pathways, timely diagnosis, and overall survival common cancers experience. We talk to patients, their families, experts, and game-changers on the current state of Rare.