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. Ho

S2E7 - Doug Lindsay, Rare Disease Innovator and Personal Medical Consultant

Aug 31st, 2021 1h 14m

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 s

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

Jul 22nd, 2021 46m 35s

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

S2E5: Sanath Kumar Ramesh, Founder of OpenTreatments Foundation

May 24th, 2021 51m 31s

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 heal

S2E4: Dr. Jennifer Mulle, Genetic Researcher

May 9th, 2021 39m 46s

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 wha

S2E3: Jeffrey Miskoff, Critical Care Physician

Mar 29th, 2021 53m 20s

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…d

S2 E2: Jessica Ballinger, Rare Disease Caretaker and Influencer

Mar 15th, 2021 33m 18s

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 o

S2E1: Steve and Beth Aselage, BioPharma Experts

Feb 26th, 2021 42m 5s

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 im

Announcing Rare Voices Season Two: Onward

Feb 19th, 2021 2m 8s

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 — ar

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

Feb 12th, 2021 1h

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 ca

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

Nov 20th, 2020 50m 53s

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 h

S1E5: David Penake, Saol Therapeutics

Nov 2nd, 2020 38m 12s

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, t

S1E4: Bill Jollie, Global Pharmaceutical

Sep 24th, 2020 42m 38s

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, admini

S1E3: Ken Greathouse, serial entrepreneur and philanthropist

Jul 7th, 2020 32m 32s

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 grea

S1E2: Jim Clement, Coues Consulting

Jul 7th, 2020 26m 38s

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 co

S1E1: Candace Lerman, RareCandace.com

Jul 7th, 2020 23m 18s

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

Rare Voices Podcast Trailer

Jun 19th, 2020 3m 13s

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

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