The Patient Voice Podcast Sun, 15 Mar 2026 21:46:03 -0400 https://www.patientvoiceinitiative.org/podcast/ en-au © 2026 The Patient Voice Podcast yes 0c3f2800-25a9-58f8-8ceb-9b5ef9eb9caa contact@patientvoiceinitiative.org The Patient Voice Initiative episodic false Buzzsprout (https://www.buzzsprout.com) patient voice, patient voice initiative, patient engagement, patient experience, healthcare, australian healthcare, healthcare, htai, health technology assessments The Patient Voice Initiative contact@patientvoiceinitiative.org https://storage.buzzsprout.com/cjqkrvgt4nif89qvbp5lsew3lv6h?.jpg The Patient Voice Podcast https://www.patientvoiceinitiative.org/podcast/ Genevieve Handley Genevieve Handley "I first became involved with advocacy when I saw my parents successfully advocate for improved care at the children’s hospital, from the setup of the home IV program, to the doubling of the funding at both South Australian CF clinics. I learnt from a young age that we can inspire change and that we all have a right to the best available health care. It’s lead to me becoming extremely passionate about health equality, through timely access to medications and the highest level of hospital care. 

In 2013 myself and several passionate members of the CF community formed YesToKalydeco, after we saw our friends overseas gain access whilst the negotiations stalled in Australia. This was the first of four campaigns for these life-changing medications, which have now all successfully been listed on the PBS, significantly improving both the life expectancy and the quality of life for those living with CF in Australia. The advocacy does not stop here though, we still need better treatments, access to supports, and ultimately, a cure. I’m particularly looking forward to working with the CF community as our needs evolve and become more diverse. I’m excited to be progressing from the community-based advocacy to working for CF Together, with resources and a team of highly skilled people, with the common goal of leaving no one behind as we drive progress for the CF community in Australia." - Genevieve Handley

Genevieve Handley https://www.linkedin.com/in/genevieve-handley-188640310/
CF Together https://www.cftogether.org.au/

Our work at Patient Voice Initiative is only possible thanks to the generous support of our Sponsors; for a full list of both our Gold and Silver contributors, please visit our Website. 

Find out more about PVI by visiting our website https://www.patientvoiceinitiative.org/

]]> "I first became involved with advocacy when I saw my parents successfully advocate for improved care at the children’s hospital, from the setup of the home IV program, to the doubling of the funding at both South Australian CF clinics. I learnt from a young age that we can inspire change and that we all have a right to the best available health care. It’s lead to me becoming extremely passionate about health equality, through timely access to medications and the highest level of hospital care. 

In 2013 myself and several passionate members of the CF community formed YesToKalydeco, after we saw our friends overseas gain access whilst the negotiations stalled in Australia. This was the first of four campaigns for these life-changing medications, which have now all successfully been listed on the PBS, significantly improving both the life expectancy and the quality of life for those living with CF in Australia. The advocacy does not stop here though, we still need better treatments, access to supports, and ultimately, a cure. I’m particularly looking forward to working with the CF community as our needs evolve and become more diverse. I’m excited to be progressing from the community-based advocacy to working for CF Together, with resources and a team of highly skilled people, with the common goal of leaving no one behind as we drive progress for the CF community in Australia." - Genevieve Handley

Genevieve Handley https://www.linkedin.com/in/genevieve-handley-188640310/
CF Together https://www.cftogether.org.au/

Our work at Patient Voice Initiative is only possible thanks to the generous support of our Sponsors; for a full list of both our Gold and Silver contributors, please visit our Website. 

Find out more about PVI by visiting our website https://www.patientvoiceinitiative.org/

]]> The Patient Voice Initiative Buzzsprout-18303655 Fri, 06 Feb 2026 04:00:00 +1100 2450 3 5 full false Renee Gosney Renee Gosney My name is Renee Gosney, and I was diagnosed with Stage 3 bowel cancer in April 2019 at the age of 25—completely out of the blue. I underwent major surgery, 4x cycles of chemotherapy over 3 months, and about six months after completing treatment, I was told my cancer was undetectable.


During my treatment, I found it difficult to connect with other young patients facing similar experiences. That led me to seek out organisations that could provide support, which is how I discovered the Queensland Youth Cancer Services Youth Advisory Group (QYCS). I first joined as a member and not long after became co-chair, a role I held for four years until finishing at the end of last year. Through this role, I was actively involved in patient advocacy, helping to create better support networks for young people navigating cancer treatment and survivorship.


As part of my journey, I also underwent genetic testing, which deepened my interest in genomics and its role in cancer treatment and awareness. My involvement allowed me to advocate for greater awareness and accessibility to genetic testing, particularly for young patients facing similar diagnoses. I am passionate about ensuring that others have access to the same resources and information that helped me through my own experience.


Today, I am still cancer-free and undergoing regular surveillance. Outside of personal advocacy, I now run my own business—a reflection of my lifelong love for pets. As they have been my rock throughout my entire journey, providing comfort and companionship from the very beginning.

Renee Gosney https://www.linkedin.com/in/renee-gosney/
WoohooPets https://woohoopets.com/

Our work at Patient Voice Initiative is only possible thanks to the generous support of our Sponsors; for a full list of both our Gold and Silver contributors, please visit our Website. 


Find out more about PVI by visiting our website https://www.patientvoiceinitiative.org/

]]> My name is Renee Gosney, and I was diagnosed with Stage 3 bowel cancer in April 2019 at the age of 25—completely out of the blue. I underwent major surgery, 4x cycles of chemotherapy over 3 months, and about six months after completing treatment, I was told my cancer was undetectable.


During my treatment, I found it difficult to connect with other young patients facing similar experiences. That led me to seek out organisations that could provide support, which is how I discovered the Queensland Youth Cancer Services Youth Advisory Group (QYCS). I first joined as a member and not long after became co-chair, a role I held for four years until finishing at the end of last year. Through this role, I was actively involved in patient advocacy, helping to create better support networks for young people navigating cancer treatment and survivorship.


As part of my journey, I also underwent genetic testing, which deepened my interest in genomics and its role in cancer treatment and awareness. My involvement allowed me to advocate for greater awareness and accessibility to genetic testing, particularly for young patients facing similar diagnoses. I am passionate about ensuring that others have access to the same resources and information that helped me through my own experience.


Today, I am still cancer-free and undergoing regular surveillance. Outside of personal advocacy, I now run my own business—a reflection of my lifelong love for pets. As they have been my rock throughout my entire journey, providing comfort and companionship from the very beginning.

Renee Gosney https://www.linkedin.com/in/renee-gosney/
WoohooPets https://woohoopets.com/

Our work at Patient Voice Initiative is only possible thanks to the generous support of our Sponsors; for a full list of both our Gold and Silver contributors, please visit our Website. 


Find out more about PVI by visiting our website https://www.patientvoiceinitiative.org/

]]> The Patient Voice Initiative Buzzsprout-18303654 Fri, 23 Jan 2026 04:00:00 +1100 3182 3 4 full false Shyamsundar Muthuramalingam Shyamsundar Muthuramalingam Dr. Shyamsundar Muthuramalingam (Shyam) holds a Ph.D. in Chemistry and is a kidney transplant recipient with personal experience in Haemodialysis (HD) and kidney disease.


 He is a key figure in consumer engagement strategies in healthcare, working with the Australia and New Zealand Dialysis and Transplant Registry (ANZDATA), South Australian Health and Medical Research Institute (SAHMRI), The George Institute for Global Health, and Kidney Health Australia (KHA). 


Dr. Muthuramalingam is a consumer member of the National Clinical Advisory Committee at KHA and the Australian Medical Council, representing the community in the accreditation of medical degrees. He also serves on the NHMRC-MRFF Interim Consumer Advisory Network. Shyam is also a member of Australian Clinical Trials Alliance’s Consumer Engagement, Equity, and Diversity Working Group, contributing to recommendations for improving clinical trial participation among culturally and linguistically diverse (CALD) backgrounds. In partnership with PRAXIS, Shyam conducts workshops on Enhancing Consumer and Community Engagement in Clinical Trials, aimed at Clinical Trial Coordinators, Managers, early-career staff, and Research Managers.

Dr. Shyamsundar Muthuramalingam https://www.linkedin.com/in/s-muthuramalingam/


Our work at Patient Voice Initiative is only possible thanks to the generous support of our Sponsors; for a full list of both our Gold and Silver contributors, please visit our Website. 


Find out more about PVI by visiting our website https://www.patientvoiceinitiative.org/

]]> Dr. Shyamsundar Muthuramalingam (Shyam) holds a Ph.D. in Chemistry and is a kidney transplant recipient with personal experience in Haemodialysis (HD) and kidney disease.


 He is a key figure in consumer engagement strategies in healthcare, working with the Australia and New Zealand Dialysis and Transplant Registry (ANZDATA), South Australian Health and Medical Research Institute (SAHMRI), The George Institute for Global Health, and Kidney Health Australia (KHA). 


Dr. Muthuramalingam is a consumer member of the National Clinical Advisory Committee at KHA and the Australian Medical Council, representing the community in the accreditation of medical degrees. He also serves on the NHMRC-MRFF Interim Consumer Advisory Network. Shyam is also a member of Australian Clinical Trials Alliance’s Consumer Engagement, Equity, and Diversity Working Group, contributing to recommendations for improving clinical trial participation among culturally and linguistically diverse (CALD) backgrounds. In partnership with PRAXIS, Shyam conducts workshops on Enhancing Consumer and Community Engagement in Clinical Trials, aimed at Clinical Trial Coordinators, Managers, early-career staff, and Research Managers.

Dr. Shyamsundar Muthuramalingam https://www.linkedin.com/in/s-muthuramalingam/


Our work at Patient Voice Initiative is only possible thanks to the generous support of our Sponsors; for a full list of both our Gold and Silver contributors, please visit our Website. 


Find out more about PVI by visiting our website https://www.patientvoiceinitiative.org/

]]> The Patient Voice Initiative Buzzsprout-18303653 Fri, 09 Jan 2026 04:00:00 +1100 3145 3 3 full false Kate Fisher Kate Fisher Kate is a bestselling author, award-winning podcast host & founder of The Milkshakes for Marleigh blood donation advocacy movement. She is on a mission to end persistent critical blood shortages in Australia and around the world. Kate’s work is inspired by her eight-year-old daughter Marleigh who lives with Autoimmune Encephalitis and is dependent on Australian plasma donors to survive. 


In May 2024, Kate was invited to address the Women Changing the World Summit in London and was awarded the Global Impact Award: Non-Profit of the Year, 2024. 


At the AusMumpreneur conference and awards in Melbourne, August, 2024, Kate was named:  Woman Changing the World of the Year, 2024;  Author of the Year, 2024; and Podcast of the Year, 2024.


Kate’s book called Milkshakes for Marleigh tells extraordinary tales of survival thanks to Australian blood donors, is available in all good bookstores now!

Kate Fisher https://www.linkedin.com/in/kate-fisher-271b93116/
Milkshakes for Marleigh https://milkshakesformarleigh.org/

Our work at Patient Voice Initiative is only possible thanks to the generous support of our Sponsors; for a full list of both our Gold and Silver contributors, please visit our Website. 


Find out more about PVI by visiting our website https://www.patientvoiceinitiative.org/

]]> Kate is a bestselling author, award-winning podcast host & founder of The Milkshakes for Marleigh blood donation advocacy movement. She is on a mission to end persistent critical blood shortages in Australia and around the world. Kate’s work is inspired by her eight-year-old daughter Marleigh who lives with Autoimmune Encephalitis and is dependent on Australian plasma donors to survive. 


In May 2024, Kate was invited to address the Women Changing the World Summit in London and was awarded the Global Impact Award: Non-Profit of the Year, 2024. 


At the AusMumpreneur conference and awards in Melbourne, August, 2024, Kate was named:  Woman Changing the World of the Year, 2024;  Author of the Year, 2024; and Podcast of the Year, 2024.


Kate’s book called Milkshakes for Marleigh tells extraordinary tales of survival thanks to Australian blood donors, is available in all good bookstores now!

Kate Fisher https://www.linkedin.com/in/kate-fisher-271b93116/
Milkshakes for Marleigh https://milkshakesformarleigh.org/

Our work at Patient Voice Initiative is only possible thanks to the generous support of our Sponsors; for a full list of both our Gold and Silver contributors, please visit our Website. 


Find out more about PVI by visiting our website https://www.patientvoiceinitiative.org/

]]> The Patient Voice Initiative Buzzsprout-18303652 Fri, 26 Dec 2025 04:00:00 +1100 2973 3 2 full false Karen van Gorp Karen van Gorp Karen van Gorp was diagnosed with stage IV melanoma in 2013 and survived through a clinical trial for a new class of treatment. She is Chair of Cancer Voices SA and an executive member of Cancer Voices Australia, where she works to strengthen consumer involvement in health technology assessment (HTA).


Karen also Co-Chairs the Consumer Advisory Group to Melanoma Patients Australia and serves as Deputy Chair of its Board. In these roles, she focuses on education and organisation to empower consumers to engage effectively in HTA and policy development. She is also on the SA Comprehensive Cancer Network Committee and is a Senior Policy Adviser for the SA Business Chamber.

Karen van Gorp
Melanoma Patients Australia https://melanomapatients.org.au/
Cancer Voices SA https://cancervoicessa.org.au/
Cancer Voices Australia https://www.cancervoicesaustralia.org/


Our work at Patient Voice Initiative is only possible thanks to the generous support of our Sponsors; for a full list of both our Gold and Silver contributors, please visit our Website. 


Find out more about PVI by visiting our website https://www.patientvoiceinitiative.org/ 

]]> Karen van Gorp was diagnosed with stage IV melanoma in 2013 and survived through a clinical trial for a new class of treatment. She is Chair of Cancer Voices SA and an executive member of Cancer Voices Australia, where she works to strengthen consumer involvement in health technology assessment (HTA).


Karen also Co-Chairs the Consumer Advisory Group to Melanoma Patients Australia and serves as Deputy Chair of its Board. In these roles, she focuses on education and organisation to empower consumers to engage effectively in HTA and policy development. She is also on the SA Comprehensive Cancer Network Committee and is a Senior Policy Adviser for the SA Business Chamber.

Karen van Gorp
Melanoma Patients Australia https://melanomapatients.org.au/
Cancer Voices SA https://cancervoicessa.org.au/
Cancer Voices Australia https://www.cancervoicesaustralia.org/


Our work at Patient Voice Initiative is only possible thanks to the generous support of our Sponsors; for a full list of both our Gold and Silver contributors, please visit our Website. 


Find out more about PVI by visiting our website https://www.patientvoiceinitiative.org/ 

]]> The Patient Voice Initiative Buzzsprout-18303647 Fri, 12 Dec 2025 04:00:00 +1100 2472 3 1 full false Louise Grant Louise Grant 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.  SCID is now detected, diagnosed and treated soon after birth in Australia - before a baby becomes critically ill or passes away.  Louise also sits on the Board of the Immune Deficiencies Foundation of Australia (IDFA), supports other families who have a child born with SCID and is an advocate and peer mentor to families living with any Immune Deficiencies.

Immune Deficiencies Foundation of Australia (IDFA) Website https://www.idfa.org.au/
IDFA Facebook https://www.facebook.com/ImmuneDeficiencyFoundationAustralia/
IDFA Instagram https://www.instagram.com/theidfa/

IDFA LinkedIn https://www.linkedin.com/company/the-immune-deficiencies-foundation-of-australia/ 

Our work at Patient Voice Initiative is only possible thanks to the generous support of our Sponsors; for a full list of both our Gold and Silver contributors, please visit our Website. 

Find out more about PVI by visiting our website https://www.patientvoiceinitiative.org/

Produced by The Podcast Boss

]]> 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.  SCID is now detected, diagnosed and treated soon after birth in Australia - before a baby becomes critically ill or passes away.  Louise also sits on the Board of the Immune Deficiencies Foundation of Australia (IDFA), supports other families who have a child born with SCID and is an advocate and peer mentor to families living with any Immune Deficiencies.

Immune Deficiencies Foundation of Australia (IDFA) Website https://www.idfa.org.au/
IDFA Facebook https://www.facebook.com/ImmuneDeficiencyFoundationAustralia/
IDFA Instagram https://www.instagram.com/theidfa/

IDFA LinkedIn https://www.linkedin.com/company/the-immune-deficiencies-foundation-of-australia/ 

Our work at Patient Voice Initiative is only possible thanks to the generous support of our Sponsors; for a full list of both our Gold and Silver contributors, please visit our Website. 

Find out more about PVI by visiting our website https://www.patientvoiceinitiative.org/

Produced by The Podcast Boss

]]> The Patient Voice Initiative Buzzsprout-15209450 Fri, 23 Aug 2024 03:00:00 +1000 2911 2 6 full false Clare Devine Clare Devine 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, Seamus, was away for work.

Claire took a break from her regular work when Seamus became ill and their infant son was diagnosed with partial blindness. This break allowed the family to reprioritise, focus on each other and give energy to Claire’s painting. As popularity for Claire’s work grew, The New Devine quickly evolved from a painting pass time into a serious, full-time business.

Claire’s art comes from a place of deep love for her family because of their circumstances with Seamus’s poor health and sons’ disability - the journey they went through (and continue to travel) to create contentment, joy and focus on family, love and togetherness all feeds and informs her artistic practice. Claire and Seamus have 3 (ex-premature baby) boys, two with albinism and legal blindness and one with Epilepsy like his father. 

Claire lives in a little seaside suburb of North Brisbane and loves coffee, vintage champagne, Dad jokes, yoga and long walks with her 'tame wolf.’

Claire’s Website https://thenewdevine.com/
Claire’s Instagram https://www.instagram.com/thenewdevine/
Claire’s LinkedIn https://www.linkedin.com/in/claire-devine-aa6a761a4/
Our work at Patient Voice Initiative is only possible thanks to the generous support of our Sponsors; for a full list of both our Gold and Silver contributors, please visit our Website. Find out more about PVI by visiting our website https://www.patientvoiceinitiative.org/ 

Produced by The Podcast Boss

]]> 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, Seamus, was away for work.

Claire took a break from her regular work when Seamus became ill and their infant son was diagnosed with partial blindness. This break allowed the family to reprioritise, focus on each other and give energy to Claire’s painting. As popularity for Claire’s work grew, The New Devine quickly evolved from a painting pass time into a serious, full-time business.

Claire’s art comes from a place of deep love for her family because of their circumstances with Seamus’s poor health and sons’ disability - the journey they went through (and continue to travel) to create contentment, joy and focus on family, love and togetherness all feeds and informs her artistic practice. Claire and Seamus have 3 (ex-premature baby) boys, two with albinism and legal blindness and one with Epilepsy like his father. 

Claire lives in a little seaside suburb of North Brisbane and loves coffee, vintage champagne, Dad jokes, yoga and long walks with her 'tame wolf.’

Claire’s Website https://thenewdevine.com/
Claire’s Instagram https://www.instagram.com/thenewdevine/
Claire’s LinkedIn https://www.linkedin.com/in/claire-devine-aa6a761a4/
Our work at Patient Voice Initiative is only possible thanks to the generous support of our Sponsors; for a full list of both our Gold and Silver contributors, please visit our Website. Find out more about PVI by visiting our website https://www.patientvoiceinitiative.org/ 

Produced by The Podcast Boss

]]> The Patient Voice Initiative Buzzsprout-15209453 Fri, 09 Aug 2024 03:00:00 +1000 2779 2 5 full false Geoff Nyssen Geoff Nyssen 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, he provides ‘blood buddy’ support to many diagnosed patients, he is a research ‘consumer’ where he supports many research projects, and he is an active presenter where he provides inspiration to others as they navigate their own adversity.  Geoff is also founder/director of MY Mount Eliza Run & Fun Festival, and has raised nearly $400k for research and patient support since 2017. Geoff believes that his diagnosis does not define him, nor limit him, and in fact, powers him towards supporting others, raising awareness and funds for myeloma research.

Geoff’s Website https://geoffnyssen.com/
Geoff’s LinkedIn https://www.linkedin.com/in/geoff-nyssen-5457a31/

Geoff’s Facebook https://www.facebook.com/geoffnyssenspage/
Our work at Patient Voice Initiative is only possible thanks to the generous support of our Sponsors; for a full list of both our Gold and Silver contributors, please visit our Website. 

Find out more about PVI by visiting our website https://www.patientvoiceinitiative.org/ 


Produced by The Podcast Boss

]]> 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, he provides ‘blood buddy’ support to many diagnosed patients, he is a research ‘consumer’ where he supports many research projects, and he is an active presenter where he provides inspiration to others as they navigate their own adversity.  Geoff is also founder/director of MY Mount Eliza Run & Fun Festival, and has raised nearly $400k for research and patient support since 2017. Geoff believes that his diagnosis does not define him, nor limit him, and in fact, powers him towards supporting others, raising awareness and funds for myeloma research.

Geoff’s Website https://geoffnyssen.com/
Geoff’s LinkedIn https://www.linkedin.com/in/geoff-nyssen-5457a31/

Geoff’s Facebook https://www.facebook.com/geoffnyssenspage/
Our work at Patient Voice Initiative is only possible thanks to the generous support of our Sponsors; for a full list of both our Gold and Silver contributors, please visit our Website. 

Find out more about PVI by visiting our website https://www.patientvoiceinitiative.org/ 


Produced by The Podcast Boss

]]> The Patient Voice Initiative Buzzsprout-15209448 Fri, 26 Jul 2024 03:00:00 +1000 2248 2 4 full false Ashley Ng Ashley Ng 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 Outstanding Contribution from Lived Experience award in 2023. Ashley sits on various advisory groups including the Diabetes Victoria consumer advisory committee, is a board member of the Primary Care Diabetes Society of Australia and chairs the Diabetes Australia Kellion Advisory Committee.

Ashley’s website Hangry Pancreas https://hangrypancreas.com/

Hangry Pancreas Instagram https://www.instagram.com/hangrypancreas/

Hangry Pancreas/Bittersweet Diagnosis Facebook https://www.facebook.com/bittersweetdiagnosis/

Ashley’s LinkedIn https://www.linkedin.com/in/ashleyng1/ 
Our work at Patient Voice Initiative is only possible thanks to the generous support of our Sponsors; for a full list of both our Gold and Silver contributors, please visit our Website. 

Find out more about PVI by visiting our website https://www.patientvoiceinitiative.org/

Produced by The Podcast Boss

]]> 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 Outstanding Contribution from Lived Experience award in 2023. Ashley sits on various advisory groups including the Diabetes Victoria consumer advisory committee, is a board member of the Primary Care Diabetes Society of Australia and chairs the Diabetes Australia Kellion Advisory Committee.

Ashley’s website Hangry Pancreas https://hangrypancreas.com/

Hangry Pancreas Instagram https://www.instagram.com/hangrypancreas/

Hangry Pancreas/Bittersweet Diagnosis Facebook https://www.facebook.com/bittersweetdiagnosis/

Ashley’s LinkedIn https://www.linkedin.com/in/ashleyng1/ 
Our work at Patient Voice Initiative is only possible thanks to the generous support of our Sponsors; for a full list of both our Gold and Silver contributors, please visit our Website. 

Find out more about PVI by visiting our website https://www.patientvoiceinitiative.org/

Produced by The Podcast Boss

]]> The Patient Voice Initiative Buzzsprout-15209447 Fri, 12 Jul 2024 03:00:00 +1000 2720 2 3 full false Kate Gough Kate Gough 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 access to SMA screening in QLD.

Move For Oakley Facebook https://www.facebook.com/oakleysSMAadventures
Move For Oakley Instagram https://www.instagram.com/moveforoakley/ 
Our work at Patient Voice Initiative is only possible thanks to the generous support of our Sponsors; for a full list of both our Gold and Silver contributors, please visit our Website. 

Find out more about PVI by visiting our website https://www.patientvoiceinitiative.org/ 


Produced by The Podcast Boss

]]> 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 access to SMA screening in QLD.

Move For Oakley Facebook https://www.facebook.com/oakleysSMAadventures
Move For Oakley Instagram https://www.instagram.com/moveforoakley/ 
Our work at Patient Voice Initiative is only possible thanks to the generous support of our Sponsors; for a full list of both our Gold and Silver contributors, please visit our Website. 

Find out more about PVI by visiting our website https://www.patientvoiceinitiative.org/ 


Produced by The Podcast Boss

]]> The Patient Voice Initiative Buzzsprout-15209425 Fri, 28 Jun 2024 03:00:00 +1000 2000 2 2 full false Clare Stuart Clare Stuart 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 Diseases.

Her dedication to improving the lives of those who live with mitochondrial disease and rare conditions is informed by her personal experience as the sister of Lizzie, who lived with a rare genetic condition (tuberous sclerosis complex.)
Clare Stuart https://www.linkedin.com/in/clare-stuart-84344443/
Mito Foundation https://www.mito.org.au/

Mito Foundation Facebook https://www.facebook.com/MitoFoundation/

Mito Foundation LinkedIn https://www.linkedin.com/company/mito-foundation/

Our work at Patient Voice Initiative is only possible thanks to the generous support of our Sponsors; for a full list of both our Gold and Silver contributors, please visit our Website. 

Find out more about PVI by visiting our website https://www.patientvoiceinitiative.org/

Produced by The Podcast Boss

]]> 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 Diseases.

Her dedication to improving the lives of those who live with mitochondrial disease and rare conditions is informed by her personal experience as the sister of Lizzie, who lived with a rare genetic condition (tuberous sclerosis complex.)
Clare Stuart https://www.linkedin.com/in/clare-stuart-84344443/
Mito Foundation https://www.mito.org.au/

Mito Foundation Facebook https://www.facebook.com/MitoFoundation/

Mito Foundation LinkedIn https://www.linkedin.com/company/mito-foundation/

Our work at Patient Voice Initiative is only possible thanks to the generous support of our Sponsors; for a full list of both our Gold and Silver contributors, please visit our Website. 

Find out more about PVI by visiting our website https://www.patientvoiceinitiative.org/

Produced by The Podcast Boss

]]> Buzzsprout-15209427 Fri, 14 Jun 2024 03:00:00 +1000 2404 2 1 full false How living with bowel cancer drove Nicole's advocacy How living with bowel cancer drove Nicole's advocacy 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 the delivery of outstanding care to patients.
]]> 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 the delivery of outstanding care to patients.
]]> The Patient Voice Initiative 73211c97-cec3-4f39-9d3c-4334f67c867c Fri, 25 Mar 2022 04:36:00 +1100 3489 nicole cooper,patient voice initiative,pvi,bowel cancer,jessica bean,cancer story,bowel cancer story,bowel cancer patient,patient voice,patient story,patient empowerment,healthcare australia 1 6 false Tanya Hall - The reality of living with heart disease Tanya Hall - The reality of living with heart disease 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 has now extended to New Zealand.

As the CEO of the only cardiac patient group actively involved in market access discussions with government, Tanya has been successful in re-energising the Australian cardiac community with the patient access to therapies discussion. Early detection and patient access to therapies across the globe is Tanya’s goal.

Tanya’s passion to both raise awareness for heart disease and ensure patients have treatment and access to proven therapies has seen her establish relationships with key stakeholders including clinicians, physicians and health industry members.
]]> 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 has now extended to New Zealand.

As the CEO of the only cardiac patient group actively involved in market access discussions with government, Tanya has been successful in re-energising the Australian cardiac community with the patient access to therapies discussion. Early detection and patient access to therapies across the globe is Tanya’s goal.

Tanya’s passion to both raise awareness for heart disease and ensure patients have treatment and access to proven therapies has seen her establish relationships with key stakeholders including clinicians, physicians and health industry members.
]]> The Patient Voice Initiative bbf856a6-1e50-412a-8d6e-a7af0dc2ccf8 Fri, 11 Mar 2022 17:18:00 +1100 1920 tanya hall,patient voice initiative,pvi,patient voice,patient healthcare,patient empowerment,patient stories,healthcare australia,jessica bean,heart disease,rare diseases,heart treatment,heart healthcare,heart health,heart foundation,heart stories,heart 1 5 false Agnes Nsofwa and her advocacy for sickle cell patients Agnes Nsofwa and her advocacy for sickle cell patients 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.
]]> 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.
]]> The Patient Voice Initiative 5473de66-8627-4c4b-80f3-8cd9a0f92c82 Fri, 25 Feb 2022 04:09:00 +1100 2952 #medical,patient voice initiative,patient experience,patient empowerment,sickle cell,sickle cell disease,agnes nsofwa,jessica bean,pvi,rare diseases 1 4 false Loss, lessons, and a lifelong legacy - Rachael Casella's story Loss, lessons, and a lifelong legacy - Rachael Casella's story 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 pregnancy.

She has now dedicated her life - and her daughter’s legacy - to helping other parents access genetic carrier screening.

As an investigator with Mackenzie’s Mission, a research project for genetic carrier screening, and author of Mackenzie’s Mission, Rachael is a powerful force in the advocacy space.

Her dedication and commitment under circumstances that most find unimaginable, is breathtaking.

]]> 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 pregnancy.

She has now dedicated her life - and her daughter’s legacy - to helping other parents access genetic carrier screening.

As an investigator with Mackenzie’s Mission, a research project for genetic carrier screening, and author of Mackenzie’s Mission, Rachael is a powerful force in the advocacy space.

Her dedication and commitment under circumstances that most find unimaginable, is breathtaking.

]]> The Patient Voice Initiative 33df2026-24fa-4b14-9442-2556d18b0bf8 Fri, 11 Feb 2022 04:07:00 +1100 2858 patient voice,patient voice initiative,jessica bean,patient empowerment,patient experience,healthcare australia,australian healthcare,health system,genetics,genetic carrier screen,genetic carrier screening,pregnancy,pregnancy loss,loss of 1 3 false Lisa Briggs a voice of change for lung cancer Lisa Briggs a voice of change for lung cancer 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 been influential in driving equitable change to authorisation of prescriptions.

Since 2014, Lisa has been a voice of change in the lung cancer community, challenging Australia’s perception of the disease and working to ensure patients get the best outcomes.
]]> 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 been influential in driving equitable change to authorisation of prescriptions.

Since 2014, Lisa has been a voice of change in the lung cancer community, challenging Australia’s perception of the disease and working to ensure patients get the best outcomes.
]]> The Patient Voice Initiative 2b666f13-c6ca-4465-91ba-fd117f1a5a5e Fri, 28 Jan 2022 05:15:00 +1100 2966 patient voice,patient voice initiative,patient experience,lung cancer,lung cancer patient,lung cancer story,cancer,cancer journey,cancer medicine,cancer support,lung cancer support,the patient voice,patient empowerment,australia,health system,australian 1 2 false Alex Parker shares her Cystic Fibrosis story Alex Parker shares her Cystic Fibrosis story 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 worked for more than four years to ensure others like her could access it in Australia.

Despite everything, Alex has established a successful career as a commercial advertising photographer, travelling the world to work on major campaigns.

She lives happily in Melbourne with her partner Michael, 4 year old daughter Ruby and dog Maxi.

Alex is joined by The Patient Voice Initiative Chair, patient advocate Jessica Bean.

]]> 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 worked for more than four years to ensure others like her could access it in Australia.

Despite everything, Alex has established a successful career as a commercial advertising photographer, travelling the world to work on major campaigns.

She lives happily in Melbourne with her partner Michael, 4 year old daughter Ruby and dog Maxi.

Alex is joined by The Patient Voice Initiative Chair, patient advocate Jessica Bean.

]]> The Patient Voice Initiative f99c7b43-0dc7-48aa-845d-8eabab7778e2 Tue, 21 Dec 2021 19:21:00 +1100 2604 alex parker,the patient voice podcast,patient voice,patient experience,patient care,cystic fibrosis,victoria,australia,australia healthcare,healthcare system,healthcare journey,patient input,health condition,lung infection,medicines australia,medicine 1 1 false