Best OVID Health Podcasts (2024)

1
PKD and the Gift of Life, feat. Patient Advocate Valen Keefer 40:10

2d ago40:10

40:10

In this episode of the podcast we speak to Valen Keefer, a professional speaker and patient advocate who was diagnosed with polycystic kidney disease (PKD) at age 10. Valen has faced a number of challenges in her journey, including a double organ transplant, and now inspires other PKD and chronic illness patients by sharing her story. Connect with …

1
Politics, Passion and Planetary Health with Sirpa Pietikäinen 30:23

6d ago30:23

30:23

In this episode of The Health Change Makers, Jenny has a conversation with Sirpa Pietikäinen, a long-time activist and politician. Through the episode, they explore Sirpa's journey from a childhood love of biology and nature to her current political career, exploring her passion for tackling global issues such as climate change and Alzheimer's. Sir…

1
Fighting for Change with Baroness Margaret Ritchie 33:12

14d ago33:12

33:12

In this episode of The Health Change Makers, Jenny speaks with politician Baroness Margaret Ritchie. They discuss Margaret's extensive political career, her personal journey with breast cancer and her perspectives on resilience and the need for expert advice in policy-making. Margaret also shares her views on the importance of vaccination programs …

1
The Power of Resiliency, Feat. Multiple Myeloma Patient Advocate Keisha Hickson 50:02

13d ago50:02

50:02

In this episode of the podcast, we speak to professional speaker and community advocate Keisha Hickson, who was diagnosed with multiple myeloma in 2016. That’s a rare form of cancer that develops in a type of white blood cell called a plasma cell. We discuss navigating a rare cancer diagnosis, adjusting to a new normal and the importance of resilie…

1
Turning Obstacles into Opportunities with Darren Harris 40:38

1M ago40:38

40:38

In this episode of The Health Change Makers, Jenny sits down with Darren Harris, a Paralympian and motivational speaker. The conversation delves into Darren's experiences as an athlete, his journey of resilience and the importance he places on living a healthy life. Darren discusses the challenges and opportunities he faced as a visually impaired a…

1
Epilepsy and Unmet Need, feat. The LGS Foundation and Ovid Therapeutics 42:39

1M ago42:39

42:39

This episode's guests include Dr. Tracy Dixon-Salazar, Executive Director for the Lennox-Gastaut Syndrome (LGS) Foundation, as well as Meg Alexander, Chief Strategy Officer of Ovid Therapeutics. We discuss the treatment landscape for seizure disorders such as LGS and why further research and investment is crucial. Connect with the LGS Foundation: W…

1
Transforming Lives Through Be My Eyes with Hans Jørgen Wiberg 38:00

2M ago38:00

38:00

In this episode of The Health Change Makers, Jenny is joined by Hans Jørgen Wiberg, founder of the revolutionary Be My Eyes app. The conversation dives into how Be My Eyes is transforming the lives of visually impaired individuals by connecting them with volunteers around the world for visual assistance. Hans shares his journey of developing the pl…

1
Ewing Sarcoma and the New Normal, feat. Patient Advocate Brandi Benson 19:48

2M ago19:48

19:48

In this episode of the podcast we sit down with Brandi Benson, a U.S. army veteran, author and patient advocate who was diagnosed with Ewing sarcoma in 2008. That’s one of rare family of cancers that develop in bones and the surrounding soft tissues. Brandi shares her story of resilience and survivorship, hoping to inspire others to share their can…

1
Swimming Against the Current with Paralympian Abbas Karimi 33:49

2M ago33:49

33:49

In this episode of The Health Change Makers, Jenny is joined by Abbas Karimi, a renowned Paralympic swimmer and World Para Swimming Championships Gold medallist. Having been born without arms, Abbas's resilience, drive and determination have led him to become a formidable competitor in the swimming world. Abbas shares his incredible life journey fr…

1
Reading with Rilke: The Fourth Elegy

2M ago

—

“Angel and Puppet: then, finally, the play begins” Bianca Stone in conversation with poet Peter Gizzi discussing Rainer Maria Rilke’s “The Fourth Elegy,” (Edward Snow translation). We’re working our way though the entire Duino Elegies. In today’s episode we begin by discussing the elegy form and both Gizzi’s personal uses of the form, as well […]…

1
Welcome to The Health Change Makers 0:41

3M ago0:41

0:41

Welcome to the Health Change Maker podcast from OVID Health. Each week, Jenny Ousbey, founder and CEO of OVID, a global healthcare communications consultancy, will be interviewing fascinating people from around the world who are driving change in the political, healthcare, advocacy, tech and sporting arenas.…

1
50 Years of Supporting the TSC Community, feat. TSC Alliance President and CEO Kari Rosbeck 33:03

2M ago33:03

33:03

In this episode of the podcast we sit down with Kari Rosbeck, the president and CEO of the TSC Alliance. That’s a nonprofit dedicated to supporting people living with tuberous sclerosis complex and also driving research into promising treatment, among many other things. The TSC Alliance is also celebrating its 50th anniversary this year! Connect wi…

1
Helping Rare Parents Help Themselves, feat. Ronda Thorington, LPC 34:52

3M ago34:52

34:52

In this episode of the podcast we sit down with Ronda Thorington, the mother of child living with mixed connective tissue disease. Ronda is also a licensed professional counselor who specializes in empowering parents of children who are living with a rare or chronic diagnosis. Connect with Ronda: Website - Facebook - Instagram Editor's Note: Chroni…

1
Reading with Rilke: The Third Elegy

3M ago

—

Bianca Stone talks with the poet Dara Barrios/Dixon about Rilke’s “The Third Elegy,” from his famous Duino Elegies. Exploring more directly the poem and its language, Barrios/Dixon and Stone look at the magnificent poetic devices Rilke uses in his unique way, such as questioning, pathetic fallacy and fungibility of pronouns in the direct address. J…

1
IPF and the Importance of Clinical Trials, feat. Patient Advocate Murray Walz 18:08

3M ago18:08

18:08

In this episode of the podcast we sit down with Murray Walz, a patient advocate who was diagnosed with the progressive lung diseases idiopathic pulmonary fibrosis (IPF) in 2019. Murray discusses the importance of support, clinical trials and why the family factor is crucial for IPF patients. Connect with the Canadian Pulmonary Fibrosis Foundation: …

1
The MS Poltergeist, feat. Patient Advocate Jennifer Angus 43:48

4M ago43:48

43:48

In this episode of the podcast we talk with Jennifer Angus, a patient advocate and para dressage competitor who was diagnosed with multiple sclerosis in 2014. Jennifer has long been involved with athletics having a history as a skiing instructor and is a big advocate of horseback riding as a way to heal the body and mind. Connect with Jennifer Rega…

1
The Bespoke Gene Therapy Consortium's New Regulatory Playbook, feat. The Foundation for the National Institutes of Health and Taylor's Tale 36:30

5M ago36:30

36:30

In this episode of the podcast we talk with Drs. Julie Gerberding and Courtney Silverthorn from the Foundation for the National Institutes of Health (FNIH). They're bringing us updates on the Bespoke Gene Therapy Consortium's new regulatory playbook that is designed to help get certain types of genetic therapies for rare diseases approved and avail…

1
Reading with Rilke: The Second Elegy

5M ago

—

We continue our series on Rilke’s Duino Elegies with Edward Snow’s translation of The Second Elegy, talking with poet Mark Wunderlich. Wunderlich, who is currently at work on a book on Rilke, is deep research into the biography, which give us rich insight into creation of “The Second Elegy.” Beginning with what Wunderlich calls the […]…

1
Hemophilia and Axel's Story, feat. Patient Advocate Kristina Robinson 27:37

5M ago27:37

27:37

In this episode of the podcast we talk with Kristina Robinson, a patient advocate and mother whose son, Axel, was diagnosed with hemophilia A when he was 10 months old. That’s a rare bleeding disorder, sometimes called “classic hemophilia,” that is characterized by excessive bleeding from cuts, unexplained bruising, joint swelling and more. Since h…

1
The Road to Resilience and Self-Advocacy, feat. Patient Advocate Kecia J. 38:13

5M ago38:13

38:13

This episode features Kecia Johnson, an author, music industry veteran and motivational speaker who was diagnosed with HIV/AIDS in her early 20s, and also with a rare form of stage-3 colorectal cancer at age 35. Kecia has been an outspoken patient advocate who has appeared in OutSmart Magazine, Shoutout Atlanta, many different podcasts and also a W…

1
Reading with Rilke: The First Elegy

6M ago

—

Rainer Maria Rilke has been hailed as one of the most profound and genius poets of the 20th century. His Duino Elegies in particular, in tandem with the Sonnets to Orpheus, are seen as the pinnacle of his poetic achievements. Whole books could be written on each elegy. Here, Bianca Stone joins with guests to […]…

1
Rare Cancer, Finances and Families, feat. Tony Laudadio of the Tony Foundation 48:39

6M ago48:39

48:39

In this episode of the podcast, we speak with Tony Laudadio, an oncology patient advocate who was diagnosed with renal cell carcinoma and oligodendroglioma, a type of rare brain cancer. In the years after his remission, Tony also started the Tony Foundation, a non-profit that helps to support families impacted by all types of cancers with crucial f…

1
The Unmet Need in Rare Disease, feat. Dr. Emil Kakkis of Ultragenyx 25:12

7M ago25:12

25:12

In this episode, we speak with Dr. Emil Kakkis, a physician and scientist who has spent more than 30 years helping to advance research, treatment and policy for rare disease patients. He is also the founder of both the EveryLife Foundation for Rare Diseases and Ultragenyx, a life sciences company dedicated to developing innovative treatments for ra…

1
The Intersection of Motherhood and Chronic Illness, Feat. aHUS Patient Advocate Taylor Coffman 43:28

7M ago43:28

43:28

On this episode of the podcast, we discuss atypical hemolytic-uremic syndrome, also known as aHUS -- a rare disorder characterized by low levels of blood platelets and blood clotting in the small blood vessels of the body. We're joined by Taylor Coffman, whose diagnosis with aHUS during pregnancy inspired her to work as a patient advocate helping t…

1
How Poetry Speaks to Change: Ovid’s Metamorphoses with Translator Stephanie McCarter

8M ago

—

An incredible and in-depth conversation with Classical scholar, Stephanie McCarter about Ovid, Horace, greco Roman poetry, the tradition of translation, retelling of myth, and the movements of poetry across the ages. Ovid’s Metamorphoses continues to speak to our fundamental issues, but how, and why? What can this new translation tell us about not …

1
A Place Beyond Shame: Ed Steck on the B Horror Film of Life

9M ago

—

Talking today about the work of creating a book from our private work on the self, reckoning with the most unbearable past; as it overlaps and interacts with the art in our lives, which in turn connects to the history of our relationship with art and others: Ed Steck, who spent much of his childhood […]…

1
Going All In On Support, feat. Patient Advocates Kathi and Dave Herzog 24:26

9M ago24:26

24:26

In observance of Alzheimer's Disease Awareness month, we sit down with patient advocate Kathi Herzog -- who was diagnosed with moderate Alzheimer's earlier this year. While not a rare condition, Alzheimer's research has informed the search for treatments in rare neurodegenerative conditions and Kathi's journey to diagosis will probably sound very f…

1
MARISA CRAWFORD, the DIARY & the 90s

10M ago

—

What is the private space of a diary, what is the public space of a poem, and what does the psyche do in each? What is confession and what is memory in the poem, if it plays with the mechanism, or tone of Diary? How to explore and play the the personal expectations of those […]By Ruth Stone House, Bianca Stone

1
Sickle Cell Society: Lessons for Creating Lasting Impact 10:55

10M ago10:55

10:55

In this episode of OVIDcast, Rachel Stewart, OVID Health Deputy Head of Patient Partnerships, continues the conversation with John James, Chief Executive Officer of the Sickle Cell Society. Listen as they discuss the benefits of adopting an innovative approach in partnerships, the importance of involving patients and families in the measurement of …

1
Learn About NMOSD feat. Patient Advocates Dr. Maggie Kang and Nell Choi 25:27

10M ago25:27

25:27

In this episode of the podcast we discuss neuromyelitis optica spectrum disease (NMOSD), a rare autoimmune disease that effects central nervous system function and can result in symptoms such as pain, vision loss, limb weakness and numbness. Joining us are Dr. Maggie Kang and Nell Choi, mother and daughter patient advocates who talk about NMOSD and…

1
Sickle Cell Society: From Awareness to Action 15:28

10M ago15:28

15:28

In this episode of OVIDcast, Rachel Stewart, OVID Health Deputy Head of Patient Partnerships, interviews John James, Chief Executive Officer of the Sickle Cell Society. In this episode John shares his insights on the progress he has seen in healthcare partnerships throughout his career, from his work with the Sickle Cell Society and his role as a j…

1
Fabry International Network: Addressing the Needs of Patients and Industry 7:09

10M ago7:09

7:09

In this episode of OVIDcast, Rachel Gonzaga, Head of Patient Partnerships at OVID Health, continues the conversation with Mary Pavlou, President of the Fabry International Network and a trained nurse who lives with Fabry disease. Listen as Mary highlights the importance of transparency in successful partnerships and the challenge of measuring the s…

1
Building Equity in the Breast Cancer Community, feat. Jasmine Souers of the Missing Pink Breast Cancer Alliance 24:23

10M ago24:23

24:23

For Breast Cancer Awareness month, in this episode we're speaking with Jasmine Souers, the president and CEO of the Missing Pink Breast Cancer Alliance about some topics that aren't often covered in mainstream oncology. We discuss the individual genotypes, treatment factors and other considerations that make each case of breast cancer a "rare" expe…

1
Fabry International Network: Connecting Patients and Advocates Worldwide 9:04

10M ago9:04

9:04

In this episode of OVIDcast, Rachel Gonzaga, Head of Patient Partnerships at OVID Health, interviews Mary Pavlou, President of the Fabry International Network as they discuss the organisation's accomplishments and the importance of transparent partnerships with the pharmaceutical industry. The Fabry International Network aims to raise awareness abo…

1
Ovacome: Patient Advocacy in Action 10:56

11M ago10:56

10:56

In this episode of OVIDcast, Rachael Gonzaga, OVID Health Head of Patient Partnerships, continues the conversation with Victoria Clare, Chief Executive of Ovacome, the National Ovarian Cancer Support Charity. Listen as they focus on trust and the need for a long-term view and clear communication in order to build lasting relationships, as well as h…

1
Haunting Performances of the (un/discovered) Self: Dorothea Lasky

11M ago

—

Dorothea Lasky and I discuss her newest collection of poetry The Shining, the deceptive nature of the “I” in poetry; the undiscovered language that haunts our very psyche–and of course a lot about Kubrick’s film adaptation of The Shining. Mactaggart Jewelry: use the code Psyche20 for 20% off! Louise Glück’s The Wild Iris Jung’s The […]…

1
Von Hippel-Lindau Disease: Meet Patient Advocate Justin Corbin 8:13

11M ago8:13

8:13

Patient Worthy's award-winning podcast is back! In this episode, we discuss Von Hippel-Lindau Disease. That's a genetic condition that causes constant tumor growth, commonly in the eyes, spine, brain and kidneys. Patient advocate Justin Corbin shares his diagnosis and treatment journey, which stretches from the 1990s today. Read more about Justin's…

1
Ovacome: Building Relationships Through Innovation 10:21

11M ago10:21

10:21

In this episode of OVIDcast, Rachael Gonzaga, OVID Health Head of Patient Partnerships, interviews Victoria Clare, Chief Executive of Ovacome, the National Ovarian Cancer Support Charity as they discuss how Ovacome provides support and information to individuals affected by ovarian cancer and their families, while also working closely with the clin…

1
The Patient Association: Connecting with Hard-To-Reach Communities 9:35

11M ago9:35

9:35

In this episode of OVIDcast, Rachael Stewart, Deputy Head of Patient Partnerships at OVID Health continues the conversation with Rachel Power, Chief Executive of the Patients Association as they explore the role of patients in partnerships with both healthcare professionals and life science companies as well as how two award-winning projects focuse…

1
The Patients Association: Driving Change Through Patient Collaboration 8:57

11M ago8:57

8:57

In this episode of OVIDcast, Rachael Stewart, Deputy Head of Patient Partnerships at OVID Health is joined by Rachel Power, Chief Executive of the Patients Association as they discuss how the Patients Association supports patients in influencing healthcare decisions and share insights on their latest strategies, including true patient partnerships …

1
National Rheumatoid Arthritis Society: Lessons Learned from Inspiring Partnerships 10:23

12M ago10:23

10:23

In this episode of OVIDcast, Rachel Gonzaga, OVID Health Head of Patient Partnerships continues the conversation with Clare Jacklin, Chief Executive of the National Rheumatoid Arthritis Society as they discuss some of the partnerships which have inspired Clare and the challenges she has faced in delivering impactful partnership working. (0:46) Insp…

1
National Rheumatoid Arthritis Society: The Importance of Patient Perspective in Healthcare Partnerships 11:34

12M ago11:34

11:34

In the first episode of OVIDcast, the Head of Patient Partnerships at OVID Health, Rachel Gonzaga, is joined by Clare Jacklin, the Chief Executive of the National Rheumatoid Arthritis Society to discuss her experiences of working in partnerships and where she would like to see partnerships focus in future. (0:27) Introduction (1:12) Who are NRAS? (…

1
OVIDcast: Patient Partnerships 0:37

12M ago0:37

0:37

OVIDcast by OVID Health explores current issues in the health and life sciences sector. In this series, experts from patient groups provide their insights on how to strengthen partnerships between patient groups and industry for better healthcare outcomes.By OVID Health

1
Poetry & Dreams with Mathias Svalina

12M ago

—

Talking with the incredible poet and artist, Mathias Svalina, about language and space of dreams, as it mirrors and informs the poem. Working consistently within the epistolary form, and the “telling” of dream form, Svalina continues the work of looking and seeing the world through the lens of the surreal, pushing against the boundaries of […]…

1
Violence in Language & Finding Repair in Poetry: Paul Hlava Ceballos

1y ago

—

In Paul Hlava Ceballos’s Banana [] is a stunning debut full length collection that explored the crushing reality of the violence of “the extractive relationship the United States has with the Americas and its people through poetic portraits of migrants, family, and memory.” The title poem is part poetry and part reportage that traces the […]…

1
How to Support the Supporters, feat. The Courageous Parents Network 28:26

1+ y ago28:26

28:26

We speak to Jennifer and Chrissy from the Couraeous Parents Network, one of Patient Worthy's newest partners. CPN is a non-profit organization and educational platform that orients, empowers and accompanies families and providers caring for children with serious illness. Learn more about what they do and how you can get involved over at their websi…

1
Working Toward the Future, Feat. GACI Global and Inozyme Pharma 22:18

2y ago22:18

22:18

On today's episode, we sit down with two of the co-founders of GACI Global, a nonprofit organization centered around families affected by Generalized Arterial Calcification of Infancy. We also speak with the Vice President of Physician and Patient Strategies at Inozyme Pharma, which is pursuing novel therapeutics for the treatment of abnormal miner…

1
The IRSF: 40 Years of Making Connections 26:46

2y ago26:46

26:46

Thank you for sticking with us while we took an unexpected break! We now return to our regular schedule of helping to share the stories of the rare disease community. In this week's episode, we sit down with Melissa Kennedy and Dominique Pichard of the International Rett Syndrome Foundation (IRSF). To learn more about Rett Syndrome and see how you …

1
The 2022 Living Rare, Living Stronger Patient and Family Forum 18:55

2y ago18:55

18:55

In this episode, we sit down with Tiffany Sammons and Pam Mace from our partners over at NORD to preview the upcoming Living Rare, Living Stronger Patient and Family Forum. This exciting yearly event brings together patient advocates and their families from around the world. Learn more about the Patient and Family Forum, taking place June 26 in Cle…

1
Getting the Support You Need, feat. Cancer Commons 16:29

2+ y ago16:29

16:29

In this episode, we speak with Shelley Frisbie and Dr. Kaumudi Bhawe of Cancer Commons, a non-profit dedicated to providing assistance to advanced cancer patients. We discuss why having a dedicated support team can be so helpful and why every cancer diagnosis is unique. To learn more about Cancer Commons, visit their website here. You can also conn…

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