Best Ronda Robinson Podcasts (2024)

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

1d ago42:39

42:39

This episode's guests include Dr. Tracey 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: …

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

15d 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
50 Years of Supporting the TSC Community, feat. TSC Alliance President and CEO Kari Rosbeck 33:03

1M 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

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

2M 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

3M 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

3M 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
Hemophilia and Axel's Story, feat. Patient Advocate Kristina Robinson 27:37

4M 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

4M 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
Rare Cancer, Finances and Families, feat. Tony Laudadio of the Tony Foundation 48:39

5M 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

5M 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

6M 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
Going All In On Support, feat. Patient Advocates Kathi and Dave Herzog 24:26

8M 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
Learn About NMOSD feat. Patient Advocates Dr. Maggie Kang and Nell Choi 25:27

9M 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
Building Equity in the Breast Cancer Community, feat. Jasmine Souers of the Missing Pink Breast Cancer Alliance 24:23

9M 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
Von Hippel-Lindau Disease: Meet Patient Advocate Justin Corbin 8:13

10M 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
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

2y 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…

1
The Importance of Persistence, feat. Patient Advocate Nathan Ehrlich 20:37

2y ago20:37

20:37

In this episode, we speak with Patient Advocate Nathan Ehrlich about SAMD9L mutations and their connection to a range of conditions, including bone marrow failure disorders, cytopenia and ataxia-pancytopenia syndrome. If you'd like to get in touch with Nathan, you can email him at nathan.ehrlich@gmail.com. You can also check out the SAMD9L mutation…

1
Forging a Path in Rare Disease Research, Feat. the Myrovlytis Trust 18:48

2+ y ago18:48

18:48

In this episode of the podcast, we meet with our partners at the Myrovlytis Trust to talk about their work in rare disease research. Keep up with the Myrovlytis Trust and their new initiatives here: Myrovlytis Trust www.myrovlytistrust.org LinkedIn: https://www.linkedin.com/company/the-myrovlytis-trust Twitter: @Myrovlytis BHD Foundation www.bhdsyn…

1
Exciting Rare Disease Developments in the EU, feat. HAE Junior 18:54

2+ y ago18:54

18:54

Hello and Happy Rare Disease Day! This week, we discuss some exciting developments concerning rare disease awareness in the EU, specifically in the Czech Republic, with Camelia Isaic and Anežka Dašková of HAE Junior. To learn more about HAE Junior, click here. More information about HAE Junior art exhibition can be found here. Read more about the E…

1
Preview: Rare Disease Week 2022 feat. The EveryLife Foundation for Rare Diseases 19:22

2+ y ago19:22

19:22

Britta Dornan and Sarah Tompkins from the EveryLife Foundation for Rare Diseases join us to preview Rare Disease Week 2022. This important event runs from February 22 through March 2 and brings together rare patients from across the U.S. to make their voices heard. To learn how you can get involved, visit the EveryLife Foundation website here, and …

1
Bridging the Challenges in Cell Therapies, feat. Dr. Brad Heller of Achieve Clinics 17:48

2+ y ago17:48

17:48

In this episode, we sit down with Dr. Brad Heller, the founder of Achieve Clinics, to discuss the potential of cell therapies, some of the current challenges and how his organization is tackling these. Learn more about Achieve Clinics here: www.achieveclinics.com.By Patient Worthy

1
The Importance of Getting Involved, Feat. Friedreich‘s Ataxia Advocate Kyle Bryant 19:05

2+ y ago19:05

19:05

This week, we talk to patient advocate and FA ambassador for the Friedreich's ataxia Research Alliance, Kyle Bryant, about the importance of getting involved in rare disease communities. To learn more about Friedreich's ataxia, visit curefa.org. Listen to Kyle's podcast, Two Disabled Dudes, at twodisableddudes.com.…

1
The Potential of CAR T-Cell Therapy, Feat. Dr. Robyn Stacy-Humphries 23:37

2+ y ago23:37

23:37

In this episode, we sit down with Dr. Robyn Stacy-Humphries with Charlotte Radiology. She talks about her diagnosis of diffuse large B-cell lymphoma and treatment with CAR T-cell therapy. To learn more about CAR T-cell therapy, click here: https://bit.ly/3GIAsAj. Dr. Stacy-Humphries also recommends a private Facebook group for CAR T-cell patients a…

1
Not Just Surviving, But Thriving With Pheo vs. Fabulous 51:36

2+ y ago51:36

51:36

In this episode, we speak with Miranda Edwards, the voice behind Pheo vs. Fabulous about her journey with pheochromocytoma. That's an ultra-rare endocrine tumor that produces adrenaline, characterized by symptoms such as rapid heartbeat and dangerously high blood pressure, among others. Topics discussed: self-advocacy, the importance of awareness, …

1
Hanging Onto Hope in the Face of AML 12:30

2+ y ago12:30

12:30

In this episode, we speak with Dave Cade, an acute myeloid leukemia patient who is in remission after an experimental treatment. We discuss keeping hope in the face of a tough diagnosis and the importance of support. Learn more about AML here.By Patient Worthy

1
The Importance of Connection With Jordan‘s Guardian Angels 28:05

3y ago28:05

28:05

In this episode, we discuss an ultra-rare genetic condition with Carole Bakhos of Jordan's Guardian Angels. To find out more about Jordan's Syndrome and how you can support this important nonprofit, check out their website here. Their podcast, "A Rare Reality," is available here or on your favorite podcast platform.…

1
Awareness and Improvement: Discussing Narcolepsy With a Sleep Medicine Doctor 18:58

3y ago18:58

18:58

In this episode, we discuss narcolepsy and the results of a recent clinical trial investigating FT218 for efficacy in treating excessive daytime sleepiness and cataplexy. Dr. Asim Roy, the medical director of the Ohio Sleep Medicine Institute and a lead investigator in the REST-ON study, joins us. To learn more about FT218 and the clinical trials, …

1
A Lifetime of Research with Dr. Cannon of the Periodic Paralysis Association 25:46

3y ago25:46

25:46

In this episode, we discuss a condition called periodic paralysis with Dr. Steve Cannon, professor and chairman of the department of physiology at the David Geffen School of Medicine at UCLA and medical advisor with the Periodic Paralysis Association. Periodic Paralysis is a rare genetic disorder that is characterized by attacks of paralysis, weakn…

1
Building the Connections with the SYNGAP Research Fund 33:23

3y ago33:23

33:23

This week, we speak with Mike Graglia from the SYNGAP Research Fund about their efforts in advocating for this underdiagnosed genetic condition. Find out more about SYNGAP and the SRF at SyngapResearchFund.org.By Patient Worthy

1
Making the "Invisible," Visible With Journalist Karina Sturm 20:35

3y ago20:35

20:35

In this episode, we speak with journalist and filmmaker Karina Sturm about Ehlers-Danlos Syndrome and disability awareness and inclusion. To learn more about Karina, or to check out her documentary, "We Are Visible," visit her website here.By Patient Worthy

1
Cure Mito Foundation: The Importance of Patient Registries 24:01

3y ago24:01

24:01

In this episode, we discuss Leigh Syndrome, a rare mitochondrial disease, with Kasey Woleben and Sophia Zilber of the Cure Mito Foundation. We talk about the importance of patient registries and how rare disease patients and families band together to work for a better future. To learn more about Leigh Syndrome and the Cure Mito Foundation, visit th…

1
37 Years of Research With the TSC Alliance 29:25

3y ago29:25

29:25

In this episode, we speak with Kari Rosbeck of the TSC Alliance to discuss tuberous sclerosis syndrome, the importance of research and how the organization adapted during the COVID-19 pandemic. Learn more about tuberous sclerosis complex and the TSC Alliance here.By Patient Worthy

1
Staying Strong and Pressing On With the Alagille Syndrome Alliance 26:00

3y ago26:00

26:00

In this episode, we sit down with Cher Bork and Roberta Smith of the Alagille Syndrome Alliance. We discuss how to support people with this rare condition and preview some upcoming events. To learn more about the Alagille Syndrome Alliance and its efforts visit www.alagille.org.By Patient Worthy

1
Living Rare, Living Stronger: NORD Patient and Family Forum 26:07

3y ago26:07

26:07

We sit down with Rebecca Aune and Jack Timperly to talk about the upcoming NORD Patient and Family Forum on June 26 and 27. We discuss what's planned for the event, the annual Rare Impact Awards and why it's important to have rare patients involved in advocacy and educational programs. To register for the Living Rare, Living Stronger: NORD Patient …

1
Author Tom Seaman Talks About Adapting to Adversity 28:18

3y ago28:18

28:18

In this week's episode, we sit down to talk with author, life coach and Patient Worthy contributor Tom Seaman. We discuss his journey through diagnosis with dystonia, how it has changed his approach to life and ways to adapt to adversity. For more information about Tom, visit his website at www.tomseaman.com.…

1
Sophie's Hope and GSD1B 21:52

3y ago21:52

21:52

This week, we speak to Jamas LaFreniere, president and founder of the Sophie's Hope Foundation and CureGSD1b -- two nonprofits dedicated to finding a cure for Glycogen Storage Disease Type 1B. GSD is a group of rare metabolic disorders characterized by a missing enzyme that allows the liver to produce glycogen. Learn how to support the Sophie's Hop…

1
Pemphigus and Pemphigoid: Talking Rare Disease Dermatology 22:29

3+ y ago22:29

22:29

In this episode, we discuss rare disease dermatology with Dr. Steven Chen, MD of Harvard Medical School. Pemphigus and pemphigoid are rare, auto-immune blistering diseases that affect the skin. Learn more about these two conditions at the International Pemphigus and Pemphigoid Foundation. Find out more about Dr. Chen's work in the field of dermatol…

1
The 2021RAREis Scholarship 25:13

3+ y ago25:13

25:13

This week, we speak with Lindsey Cundiff of the EveryLife Foundation for Rare Diseases about the 2021 RAREis scholarship. This fund helps adult rare disease patients achieve their educational goals. We're also joined by Veronica Tingzon, a 2020 scholarship recipient, who talks about her experiences pursuing a nursing degree. Applications for the 20…

1
Narcolepsy: A 20-Year Journey to Diagnosis 18:36

3+ y ago18:36

18:36

This week, we speak with EMT and narcolepsy advocate Tara O'Conner about her recently published article on PatientWorthy.com. Tara talks about her journey to diagnosis, why narcolepsy is an under-diagnosed condition and ways friends and family can be supportive of someone with the condition. Read Tara's article here.…

1
Sharing Patient Voices With Elephants and Tea 29:52

3+ y ago29:52

29:52

This week, Colby talks to Nick Giallourakis, the co-founder and executive director of Elephants and Tea, a non-profit media outlet dedicated to sharing patient voices in the adolescent and young adult cancer community. Find out more about Elephants and Tea here. Their podcast, "Spilling Tea With the G's" is found on YouTube here.…

1
The Economic Burden of Rare Disease 32:31

3+ y ago32:31

32:31

This week, we speak with Annie Kennedy from the EveryLife Foundation about their groundbreaking study examining the economic burden of rare disease. We're joined by Marissa Penrod from Team Joseph, a Duchenne muscular dystrophy nonprofit to discuss how these numbers assist in rare disease advocacy. Read the full study here: www.everylifefoundation.…

1
Helping Patients Achieve Their Potential With HAE Junior 30:29

3+ y ago30:29

30:29

This week, Colby speaks with Camelia Isaic from HAE Junior in the Czech Republic to discuss her organization's ongoing efforts to improve the lives of HAE patients. Find out more about HAE Junior at www.haejunior.cz. For more information about the Fight the Swell podcast, visit: https://bit.ly/3ojRV9Q…

1
Fighting for Access and Awareness With Dreamsickle Kids 16:56

3+ y ago16:56

16:56

Colby speaks with Gina Glass, the founder of the Dreamsickle Kids Foundation in Nevada. Her sickle cell disease organization has helped to raise awareness and form legislation centered around access in that state. Gina speaks about her ongoing efforts, how to support family members with sickle cell, and what's on the horizon. Find out more at www.d…

1
An Editor Shares Her Cystic Fibrosis Story 21:10

3+ y ago21:10

21:10

Rachel Sutherland, an editor and copywriter with our partners at Snow Companies, shares her cystic fibrosis story. She discusses diagnosis and the importance of establishing a support system.By waithowdoyouspellthatraredisease

1
20 Years of Connections: The Glanzmann's Research Foundation 28:31

3+ y ago28:31

28:31

In this episode, Colby speaks with Taylor Anne Burtz and Peter Zdziarski of the Glanzmann's Research Foundation. Glanzmann's thrombasthenia is rare genetic condition characterized as a blood clotting disorder. Taylor and Peter discuss their personal experiences with the condition and the foundation's goals of connecting patients and advancing resea…

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Ronda Robinson Podcasts

Podcasts Worth a Listen

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