Latest Redis Podcast Episodes
Episode 228 - Strength In Unity - The Power of Consolidated Rare Disease Advocacy, Collaborative Breakthroughs, and the Every Cure Initiative with Dr. David Fajgenbaum
Once Upon A Gene - May 09, 2024 11:00 - 51 minutes ★★★★★ - 251 ratingsONCE UPON A GENE - EPISODE 228 Strength In Unity - The Power of Consolidated Rare Disease Advocacy, Collaborative Breathroughs, and the Every Cure Initiative with Dr. David Fajgenbaum Dr. David Fajgenbaum is is a groundbreaking physician-scientist, disease hunter, speaker, and national bestselli...
Bringing Balance Back to the Language of Disability from The Special Needs Mom Podcast with Kara Ryska
Once Upon A Gene - April 25, 2024 11:00 - 51 minutes ★★★★★ - 251 ratingsConnect with Kara, host of The Special Needs Mom Podcast: Instagram: https://www.instagram.com/thespecialneedsmompodcast/ Website: https://www.kararyska.com/ Coaching Opportunities Pathway to Peace {Group Coaching Program}: Schedule a Consult or Contact Me Join The Special Needs Mom Podcast Comm...
Episode 26 with Sam Stallings
HC&U - April 25, 2024 04:00 - 33 minutes ★★★★★ - 18 ratingsIn the twenty sixth episode of HC&U, we interview Sam Stallings, HCU patient and advocate. We discuss Sam's experience living with multiple rare diseases and her advocacy for the HCU community. We wrap up with Lindsey’s Low-Pro Bitessss. We discuss homemade pop tarts and rate it on our rando...
From Classrooms to Communities - Parents Visionary Journey in Education, Living, and Advocacy for Inclusion and Epilepsy Funding with Jillian and Scott Copeland
Once Upon A Gene - April 18, 2024 11:00 - 45 minutes ★★★★★ - 251 ratingsONCE UPON A GENE - EPISODE 226 From Classrooms to Communities - Parents Visionary Journey in Education, Living, and Advocacy for Inclusion and Epilepsy Funding with Jillian and Scott Copeland Jillian and Scott Copeland are husband and wife, advocates and pioneers who have transformed their perso...
The Bravery of the Brokenhearted - A Big Brothers Perspective on Grief From the Loss of a Sibling with Sanfilippo Syndrome with Noah Siedman
Once Upon A Gene - April 11, 2024 15:42 - 46 minutes ★★★★★ - 251 ratingsONCE UPON A GENE - EPISODE 225 The Bravery of the Brokenhearted - A Big Brothers Perspective on Grief From the Loss of a Sibling with Sanfilippo Syndrome with Noah Siedman Noah Siedman was a big brother to Ben who had Sanfilippo Syndrome, a devastating disease that leads to childhood dementia an...
The Complicated World of ICD10 Codes with CEO and Co-Founder of SLC6A1 Connect - Amber Freed
Once Upon A Gene - April 04, 2024 11:00 - 28 minutes ★★★★★ - 251 ratingsONCE UPON A GENE - EPISODE 224 The Complicated World of ICD10 Codes with CEO and Co-Founder of SLC6A1 Connect - Amber Freed Advocate, rare mom and Founder of SLC6A1 Connect, Amber Freed joins me to talk about ICD-10 codes— the frustrations, the battles, and the common-sense changes we're fightin...
Episode 462 - Sandeep Sahay, MD
I'm Aware That I'm Rare: the phaware® podcast - April 01, 2024 15:00 - 8 minutes ★★★★★ - 14 ratingsIn this episode, Dr. Sandeep Sahay, a pulmonologist at Houston Methodist Hospital, discusses the concept of disease modification in the treatment of pulmonary hypertension (PH). He explains how traditional PH therapies focus on vasodilation, reducing pressure in the pulmonary artery by dilating ...
Rare Epilepsy Network with Ilene Penn Miller and Christina Sanlnocencio
Once Upon A Gene - March 28, 2024 11:00 - 51 minutes ★★★★★ - 251 ratingsONCE UPON A GENE - EPISODE 223 Rare Epilepsy Network with Ilene Penn Miller and Christina Sanlnocencio Ilene Miller and Christina SanInocencio are advocates doing groundbreaking work at the Rare Epilepsy Network (REN), a volunteer network of epilepsy organizations banding together, sharing resea...
Episode 25 with Jamela Gutierrez
HC&U - March 28, 2024 08:56 - 30 minutes ★★★★★ - 18 ratingsIn the twenty fifth episode of HC&U, we interview Jamela Gutierrez, HCU patient and advocate. We discuss Jamela's journey with HCU and patient advocacy. We wrap up with Lindsey’s Low-Pro Bites. We discuss veggie pot pie and rate it on our random fruit or veggie scale! We hope you enjoy! Pl...
Episode 461 - UNISUS PAH Clinical Trial
I'm Aware That I'm Rare: the phaware® podcast - March 25, 2024 15:00 - 16 minutes ★★★★★ - 14 ratingsSPECIAL EDITION: Jonathan Hudson is a Global Trial Leader in Pulmonary Hypertension at Janssen Research & Development and is accompanied by colleague Josephine Garcia-Ferrer, Ph.D and Medical Manager. Jonathan and Josephine discuss Pulmonary Arterial Hypertension (PAH), the importance of clini...
Krabbe Disease with Kasey Feldt
Once Upon A Gene - March 21, 2024 11:00 - 29 minutes ★★★★★ - 251 ratingsONCE UPON A GENE - EPISODE 222 Krabbe Disease with Kasey Feldt Kasey Feldt is the mom of two- one year old Lukas and Dawson, who passed away from Krabbe disease. Kasey has become a passionate and unstoppable advocate, not only advocating for Krabbe disease, but also the newborn screening system ...
Episode 460 - Lewis Romer, MD
I'm Aware That I'm Rare: the phaware® podcast - March 18, 2024 15:00 - 10 minutes ★★★★★ - 14 ratingsDr. Lewis Romer discusses his work on the PPHNet's Kids MoD PAH Trial: Mono- vs. Duo-Therapy for Pediatric PAH patients. The Kids Mod PAH study is a research project funded by the NIH that aims to determine the best initial therapy for children with newly diagnosed pulmonary hypertension. The ...
In-Depth Look Inside the 2023 PSC Partners Conference: A Conversation with Medical Science Liaison Joanne Hatchett
Living With PSC - March 17, 2024 20:31 - 20 minutes ★★★★★ - 25 ratingsPSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Niall McKay. Each month, this podcast explores the latest research and knowledge about primary sclerosing cholangitis (PSC), a rare liver disease. From patient stories, to the latest research updates from P...
BeginNGS - Newborn Genomic Sequencing to End the Diagnostic Odyssey with Dr. Stephen Kingsmore, Wendy Erler and Tom DeFay
Once Upon A Gene - March 14, 2024 11:00 - 38 minutes ★★★★★ - 251 ratingsONCE UPON A GENE - EPISODE 221 BeginNGS - Newborn Genomic Sequencing to End the Diagnostic Odyssey with Dr. Stephen Kingsmore, Wendy Erler and Tom DeFay I'm joined by Dr. Stephen Kingsmore, Wendy Erler and Tom DeFay to discuss BeginNGS, a ground-breaking initiative that stands at the forefront o...
Episode 459 - Morris Salem, MD
I'm Aware That I'm Rare: the phaware® podcast - March 11, 2024 15:00 - 7 minutes ★★★★★ - 14 ratingsIn this episode, Dr. Morris Salem, a pediatric cardiologist, discusses his involvement with Camp del Corazon, a camp for children with congenital heart disease. Dr. Salem emphasizes the importance of addressing the emotional well-being of these patients, in addition to their physical health. He ...
A Rare Collection - From Financial Strain to Supportive Gain - A Call For Action
Once Upon A Gene - March 07, 2024 12:00 - 17 minutes ★★★★★ - 251 ratingsONCE UPON A GENE - EPISODE 220 A Rare Collection - From Financial Strain to Supportive Gain - A Call For Action There's power in storytelling- for the listener and the storyteller. A Rare Collection is a monthly series featuring people from the rare disease community, sharing a story with a comm...
Episode 458 - Brittany Valim
I'm Aware That I'm Rare: the phaware® podcast - March 04, 2024 16:00 - 13 minutes ★★★★★ - 14 ratingsIn this episode, Brittany Valim shares her experience with pulmonary hypertension and her journey towards a heart and double lung transplant. She now lives a fulfilling life as a mother, student, and aspiring nurse. Brittany encourages others to embrace life and ride the wave, appreciating the ...
Genomics England Clinical Lead for Genetic Counseling - Amanda Pichini
Once Upon A Gene - February 29, 2024 12:00 - 43 minutes ★★★★★ - 251 ratingsONCE UPON A GENE - EPISODE 219 Genomics England Clinical Lead for Genetic Counseling - Amanda Pichini Amanda Pichini is a genetic counselor from Genomics England, here to share their initiatives and mission. EPISODE HIGHLIGHTS What is your role at Genomics England and how did your career devel...
Episode 24 with Liz Carter
HC&U - February 29, 2024 05:00 - 36 minutes ★★★★★ - 18 ratingsIn the twenty fourth episode of HC&U, we interview Liz Carter, communications manager of HCU Network America, caregiver advocate, and mother to Elliot who has classical homocystinuria. We discuss metabolic newborn screening, patient advocacy, and Rare Disease Week. We wrap up with Lindsey’s ...
Episode 457 - Cam Wells
I'm Aware That I'm Rare: the phaware® podcast - February 26, 2024 16:00 - 13 minutes ★★★★★ - 14 ratingsIn this episode, stroke survivor and journalist, Cam Wells, discusses his mission to change the way disability stories are portrayed in the media. Cam also discusses his work in the disability community, including his involvement with the Italian Canadian HandiCapable Association, which prov...
Rejection and PSC Recurrence After Liver Transplant: A Conversation with Dr. David Goldberg
Living With PSC - February 22, 2024 18:09 - 31 minutes ★★★★★ - 25 ratingsPSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Niall McKay. Each month, this podcast explores the latest research and knowledge about primary sclerosing cholangitis (PSC), a rare liver disease. From patient stories, to the latest research updates from P...
James G Robinson - More Than We Expected Author - Five Years with a Remarkable Child
Once Upon A Gene - February 22, 2024 12:00 - 53 minutes ★★★★★ - 251 ratingsONCE UPON A GENE - EPISODE 218 James G Robinson - More Than We Expected Author - Five Years with a Remarkable Child James Robinson is a dad and the author of More Than We Expected: Five Years With a Remarkable Child, a deeply moving book and a testament to the strength found in vulnerability, th...
Episode 456 - Harm Bogaard, MD
I'm Aware That I'm Rare: the phaware® podcast - February 19, 2024 16:00 - 6 minutes ★★★★★ - 14 ratingsHarm Bogaard, MD, Ph.D., FAHA is a pulmonologist at the Amsterdam UMC. In this episode, he discusses the use of magnetic resonance imaging (MRI) in monitoring pulmonary hypertension patients. Dr. Bogaard explains that MRI is a valuable tool for assessing the function and structure of the right h...
More of Everything - How I Became a Better Parent to My Child With Extreme Special Needs By Lifting My Emotional Burdens With SYNGAP1 Mom - Janie Reade
Once Upon A Gene - February 15, 2024 13:39 - 51 minutes ★★★★★ - 251 ratingsONCE UPON A GENE - EPISODE 184 More of Everything - How I Became a Better Parent to My Child With Extreme Special Needs By Lifting My Emotional Burdens With SYNGAP1 Mom - Janie Reade Janie Reade is an author and mom to three adult sons, one with a severe neurodevelopmental disorder caused by a m...
Episode 455 - Dawn Clarke
I'm Aware That I'm Rare: the phaware® podcast - February 12, 2024 16:00 - 14 minutes ★★★★★ - 14 ratingsPulmonary hypertension patient, Dawn Clarke, a resident of the Mississaugas of the Credit First Nation in Southern Ontario. Despite her rare disease diagnosis, Dawn decided to focus on her mental health and explore her creative passions. She emphasizes the importance of looking after all aspect...
Uniting Science and Hope - COMBINEDBrain and it's Quest to Transform Research and Treatment for Rare Genetic Neurodevelopmental Disorders with Terry Jo Bichell
Once Upon A Gene - February 08, 2024 12:00 - 55 minutes ★★★★★ - 251 ratingsONCE UPON A GENE - EPISODE 217 Uniting Science and Hope - COMBINEDBrain and its Quest to Transform Research and Treatment for Rare Genetic Neurodevelopmental Disorders with Terry Jo Bichell Terry Jo Bichell is a rare mom, neuroscientist and the founder of COMBINEDBrain, a nonprofit organization ...
Episode 454 - Linda Wimmer
I'm Aware That I'm Rare: the phaware® podcast - February 05, 2024 16:00 - 11 minutes ★★★★★ - 14 ratingsNew Jersey patient, Linda Wimmer, shares her experience with idiopathic pulmonary arterial hypertension. Linda discusses the various medications and lifestyle changes she has had to make to manage her condition. She also mentions dealing with depression and anxiety, as well as the challenges of...
A Rare Collection - Five Advocacy Aces Share Their Conference Commandments
Once Upon A Gene - February 01, 2024 12:00 - 39 minutes ★★★★★ - 251 ratingsONCE UPON A GENE - EPISODE 201 A Rare Collection - Five Advocacy Aces Share Their Conference Commandments EPISODE HIGHLIGHTS Melissa Hioco, STXBP1 DO: Offer a family hospitality room where parents can see the broadcast and stay involved in the conference. Provide sibling spaces and make them f...
How We Got Here: Abortion in Wisconsin Since 1849
WPR Reports - January 30, 2024 22:47 - 28 minutes ★★★★★ - 61 ratingsA challenge to Wisconsin’s abortion ban could already be making its way to the state Supreme Court. The law was first passed in 1849 and went back into effect last […]
Coming Soon – How We Got Here: Abortion in Wisconsin Since 1849
WPR Reports - January 30, 2024 22:43 - 2 minutes ★★★★★ - 61 ratingsA challenge to Wisconsin’s abortion ban could already be making its way to the state Supreme Court. The law was first passed in 1849 and went back into effect last […]
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- Raredisease 11
- Faith 3
- Awareness 2
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- Medical 2
- Transplant 2
- Parenting 2
- Specialneeds 2
- Chronicillness 2
- Rarediseases 2
- Alpha1 2
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- Disability 2
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