Najlepsze podcasty z kategorii: Rare Voices (2024)

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The Patient-First 2022 Outlook for Rare Disease 51:34

2+ y ago51:34

51:34

On this episode, we hear from a variety of voices in the front lines of rare patient-first care. With pandemic uncertainty looming, there are a lot of questions that are constantly emerging for people with rare conditions and their families. How can potential challenges be seen as opportunities for improved quality of care? What are the creative wa…

1
S2E7 - Doug Lindsay, Rare Disease Innovator and Personal Medical Consultant 1:14:16

3y ago1:14:16

1:14:16

21- year-old Doug Lindsay seemingly had his whole life in front of him. However, in college, that future was turned upside down, leaving him bedridden and homebound dealing with his autonomic-adrenal condition.After countless treatments and strategizing with the best in the medical field, Doug sought to have a surgery done that would blur ethical l…

1
S2E6: Effie Parks, Podcast Host, Once Upon a Gene, Mother to a Rare Disease Warrior 46:35

3y ago46:35

46:35

The families of people with rare conditions often feel like they have to live two lives.For the person they love and care about, their son or daughter or their parent, they want to put on a tough and sunny face. When they take their loved one out in public, they want everyone to see just how strong the family is and how everyone should be grateful.…

1
S2E5: Sanath Kumar Ramesh, Founder of OpenTreatments Foundation 51:31

3y ago51:31

51:31

Being rare is, by definition, a lonely and hopeless thing. Loving and caring for someone with a rare condition can sometimes feel even more lonely and hopeless. You spend most of your free time thinking how can I help them or influence the health care industry to find a cure for the rare condition my father, mother, child, brother, sister, husband …

1
S2E4: Dr. Jennifer Mulle, Genetic Researcher 39:46

3y ago39:46

39:46

In the years that I have worked in health care, I have seen the term “patient first” plastered on so many company websites. More often than not, though, that promise does not hold up when you look under the hood. They say patient first. But what they really mean is: We thought about a mass we call patients.The thing they are missing out on, however…

1
S2E3: Jeffrey Miskoff, Critical Care Physician 53:20

3y ago53:20

53:20

The past year has shaken so many of us to our core. I remember, about a year ago, sending everyone home from our offices at Optime Care. And everything felt uncertain. When could we bring people back? What about our patients? They count on us…daily. How will COVID-19 impact them? Not just their health, but their access to other care givers?I went b…

1
S2 E2: Jessica Ballinger, Rare Disease Caretaker and Influencer 33:18

3+ y ago33:18

33:18

Almost all of us in the world of rare and orphan have one of these stories. For me, it was my father and my family, of course. But, almost without exception, everyone I know who is leading an effort to improve the lives of people with rare or orphan conditions has had a catalytic moment with a patient. Maybe it was during clinical trials or at a pa…

1
S2E1: Steve and Beth Aselage, BioPharma Experts 42:05

3+ y ago42:05

42:05

One of our guest we bring you in this episode is a self-described industry dinosaur. The reason he can make a claim like that, of course, is his longevity. But also, perhaps without knowing it, he can make that claim because of the long-term impact he has had on health care. In fact, if you look back over the past 30 years of pharmaceuticals, you c…

1
Announcing Rare Voices Season Two: Onward 2:08

3+ y ago2:08

2:08

We started this show a few months ago. It during the height of the pandemic. While that may seem strange to start something new when health care was getting turned upside down, we felt compelled to deliver something to people who — like us — are committed to creating a path to fulfillment for patients with orphan conditions. So we felt a tug. A cal…

1
S1E7: Donovan Quill and Michelle Hefley, cofounders of Optime Care 1:00:35

3+ y ago1:00:35

1:00:35

For the final episode of our first season, we take a look back at the year that was. Despite our best-laid plans, 2020 had the health care industry on its heels. The pandemic created so much uncertainty and disrupted the familiar pathways to care for patients with rare and orphan conditions.Given the volatility of our past year, what could be our h…

1
S1E6: Monica Weldon, Founder of Bridge the Gap: SYNGAP Education and Research Foundation 50:53

3+ y ago50:53

50:53

After years of tests, after countless of late-night WebMD searches, and a sea of referrals … after hours on the phone with insurance companies and payment plans. After all of that. That is when you FINALLY receive the words: We think your son has a rare condition. And just when you thought you would get answers. That — for patients with rare and or…

1
S1E5: David Penake, Saol Therapeutics 38:12

3+ y ago38:12

38:12

Anyone who has invested their time in creating improved outcomes for patients becomes familiar with a kind of balancing act. You must be committed to the science and precision involved in diagnosis and therapy — the research, the development, the trials, the care plan. You must also be devoted to the art of the therapy — the patient’s well-being, t…

1
S1E4: Bill Jollie, Global Pharmaceutical 42:38

3+ y ago42:38

42:38

In healthcare, it is easy to become cynical. We are surrounded by the shortcomings of our own industry — it’s easy to criticize and point out where we fall short.Everyone… frontline workers, patients, doctors, pharmacists, researchers, administrators… we all have, at some time or another, felt powerless to make things better. This powerlessness is …

1
S1E3: Ken Greathouse, serial entrepreneur and philanthropist 32:32

4y ago32:32

32:32

Some people are the unique combination of visionary genius and thoughtful character. They connect the head and the heart. Our guest for Rare Voices Episode 3 is one such person, Ken Greathouse. Ken is a veteran commercialization guru and a great friend. Ken has a decades-long point-of-view on developing innovative therapies with a proven track reco…

1
S1E2: Jim Clement, Coues Consulting 26:38

4y ago26:38

26:38

One of the least understood components of commercialization is the role of the payer. For manufacturers, it is hard to know how to set the right strategy. For specialty pharmacies, lack of clarity in payer strategy can create challenges with consistent patient experience. For patients, insurance is a black box that they often feel like they have to…

1
S1E1: Candace Lerman, RareCandace.com 23:18

4y ago23:18

23:18

You never get a second chance to introduce your first episode. So, we wanted to start Rare Voices with someone who has granted opportunities for being heard to so many patients, Candace Lerman. Candace, a self-identified disease warrior, is an unconventional advocate for creating a more fulfilling life experience for patients with chronic and rare …

1
Rare Voices Podcast Trailer 3:13

4y ago3:13

3:13

Introducing Rare Voices. The show that reveals the wisest path to a fulfilled life for patients with rare and orphan disorders. Brought to you by the people at Optime Care, a pioneering specialty pharmacy. Hosted by Donovan Quill. Subscribe at www.optimecare.com/rare-voices or anywhere you listen to podcasts.…

Podcasty warte posłuchania

Rare Voices Podcasty

Podcasty warte posłuchania

1
Rare Voices Podcast

Optime Care

1
The Patient-First 2022 Outlook for Rare Disease 51:34

1
S2E7 - Doug Lindsay, Rare Disease Innovator and Personal Medical Consultant 1:14:16

1
S2E6: Effie Parks, Podcast Host, Once Upon a Gene, Mother to a Rare Disease Warrior 46:35

1
S2E5: Sanath Kumar Ramesh, Founder of OpenTreatments Foundation 51:31

1
S2E4: Dr. Jennifer Mulle, Genetic Researcher 39:46

1
S2E3: Jeffrey Miskoff, Critical Care Physician 53:20

1
S2 E2: Jessica Ballinger, Rare Disease Caretaker and Influencer 33:18

1
S2E1: Steve and Beth Aselage, BioPharma Experts 42:05

1
Announcing Rare Voices Season Two: Onward 2:08

1
S1E7: Donovan Quill and Michelle Hefley, cofounders of Optime Care 1:00:35

1
S1E6: Monica Weldon, Founder of Bridge the Gap: SYNGAP Education and Research Foundation 50:53

1
S1E5: David Penake, Saol Therapeutics 38:12

1
S1E4: Bill Jollie, Global Pharmaceutical 42:38

1
S1E3: Ken Greathouse, serial entrepreneur and philanthropist 32:32

1
S1E2: Jim Clement, Coues Consulting 26:38

1
S1E1: Candace Lerman, RareCandace.com 23:18

1
Rare Voices Podcast Trailer 3:13

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