In our final episode of Trial by Fire, Michele Rhee joins us in discussing her experience as a clinical trial participant and industry expert. Michele is an active patient advocate for cancer and rare disease and has supported the development o

A patient's clinical trial journey

Feb 16th, 2022 33m 23s

In this episode, clinical study participant, Susan Lovelace, shares her trial journey with our favorite duo. Susan describes her experience living with a rare condition, having to travel to a study site, and interactions with her trial team.

Industry challenges and gaps between drug development and patients

Feb 9th, 2022 50m 6s

In this episode, our Trial By Fire duo interviews Scott Schliebner. Scott is a clinical drug development executive with over 25 years of experience across the CRO, biotech, and non-profit sectors. They cover the gap between drug development an

Caregiving during COVID-19 and designing protocols for the patient

Feb 2nd, 2022 1h 1m

In this week’s episode, Aaron and Brittany are joined by Anne Marie Mercurio who is a patient research advocate primarily in oncology. They discuss the struggles of caregiving in the COVID-19 pandemic, listening to the patient experience and re

Trial by Fire Introduction

Jan 26th, 2022 51s

The Clara Team is excited to introduce our limited podcast series: Trial by Fire, which chronicles candid clinical trial experiences and discusses how we can tackle these issues as an industry and work towards creating a system that takes into

Wolfram syndrome, Paralympic athletes, and all things patient engagement

Jan 26th, 2022 58m 5s

Our hosts, Aaron and Brittany, are joined by Richie Kahn in our first ever Trial By Fire episode. Richie is a clinical researcher, patient advisor, and health policy professional. In this episode, Richie touches on his experience living with Wo

Lucky Number 13: Peter Morley's Endless Advocacy

Feb 27th, 2019 1h 7m

Peter lives with multiple chronic conditions but has spent the past two years tirelessly advocating for patients everywhere by taking the morning train from his home in New York City to Washington D.C. Aaron talks to Peter about what advocacy h

Combatting Ultra-Rare Disease

Feb 20th, 2019 17m 1s

Aaron interviews Dr. Alex Solyom, senior medical director at Enzyvant, about his team's work in developing a new therapy for an ultra-rare genetic condition known as Farber disease.

Advocating for Rare Disease in Mississippi

Dec 24th, 2018 49m 4s

A newborn screening is a routine procedure. Shannah didn't give it much thought as she brought her daughter, Emmalyn, home from the hospital. But a late-night call set her down a road towards advocacy that she couldn't have predicted.

Representation Matters: Increasing Inclusivity in Research

Dec 5th, 2018 31m 9s

Lilly chats with the ladies of the MS Minority Research Engagement Partnership Network (which is a bit of a mouthful!) Holly, Anita, and Shawn about their work in increasing inclusivity and access in scientific research.

Beyond Sweat: How Hyperhidrosis Shapes Everyday Life

Nov 28th, 2018 24m 57s

Maria Thomas joins Lilly in honor of Hyperhidrosis Awareness Month to talk about her “life as a puddle” and inspiring advocacy work.

Midterms 2018: Healthcare is on the ballot

Oct 31st, 2018 56m 59s

To discuss the healthcare issues that are at stake in the upcoming midterm elections, we speak to lawyer, healthcare advocate, and professional patient, Matt Cortland. As a person living with chronic illnesses, Matt knows all too well the neces

Healthcare is on the ballot, with Matt Cortland

Oct 31st, 2018 56m 59s

Christopher Snider from Tidepool.org

Oct 10th, 2018 28m 26s

Welcome to Season Two of the Patients Have Power Podcast! After a summer of planning and plotting, we're back and expanding the conversation beyond patient stories to include stories from healthcare and healthtech. To kick off the new season, L

Twenty-two - "How can I make a difference today?"

Aug 1st, 2018 1h 14m

Peter Morley (@morethanmySLE on Twitter) is using his story to help fight for healthcare. Although he was once a very private person who never even told his friends he had cancer, Peter found his voice after the 2016 Presidential election, when

Twenty-one: "If you had three wishes, what would they be?"

Jul 25th, 2018 25m 46s

Ashley Boynes-Shuck is a writer, patient advocate, and a powerhouse voice for those who live with chronic conditions. Among other things, she's a published author who just finished her fourth book, an animal lover and advocate, a lover of fashi

Twenty - "My heart is tipped over."

Jul 18th, 2018 31m 8s

"My heart is in the wrong place in my chest." Molly Sarah chats with Lilly about her long road to diagnosis, her stint as a roller derby athlete, and why her rheumatologist shouted, "Oh my god, I got one!" when he first met her.

Episode 19 - "I just could not get a smile off my face!"

Jul 11th, 2018 25m 31s

Savannah was told she had depression...when, in fact, she was living with arthritis. Now, she uses her condition as an opportunity to give back to research through participation in clinical trials, patient advocacy, and sharing her story.

Episode Eighteen - "From a patient perspective, not much has changed."

Jun 26th, 2018 28m 59s

Dan Sfera - aka The Clinical Trials Guru - has been working in clinical trials since 2005. Over the years, he's seen how patient recruitment has changed...but, mostly, how it has remained the same. Dan and Aaron talk about the need of new tech

Episode 17 - "Patients are the end client at the end of the day."

Jun 19th, 2018 23m 21s

Leilani is an advocate in the transplant and chronic illness community. She stopped by the Clara offices to talk about her experience receiving a heart transplant, what drives her to her advocacy, and how patients need to be treat like the user

Episode Sixteen - A new fight over pre-existing conditions; new Right to Try legislation

Jun 12th, 2018 27m 42s

Lilly and Aaron break down a renewed effort to undermine the Affordable Care Act by stripping out the legislation's protections for those living with pre-existing conditions (a list which includes...acne and...(checks notes) pregnancy?). They a

Episode 15 - "A fiery ball of rage."

Jun 5th, 2018 33m 18s

Lilly sits down with Anna Evangeline - aka Six Hips (sixhipsandcounting.com) - for a frank and open chat about advocacy and her own health journey. Anna details her multiple surgeries, the long hospital stays and fighting for the care that she

Fourteen - "The Luckiest of the Unlucky"

May 25th, 2018 27m 39s

In this episode, I had the absolute pleasure of sitting down with Michele Rhee, Enzyvant’s Head of Patient Affairs. A simple job title doesn’t quite do her story justice: Michele’s road to patient advocacy involves a cancer diagnosis, a collaps

One - "She has Crohn's disease, and she's pretty rad!"

May 18th, 2018 26m 17s

When we were planning out the Patients Have Power! podcast, there was one name kept popping up as the perfect first guest to have visit Clara Studios. So you can imagine that we were absolutely thrilled that Amanda found time in her busy schedu