Welcome to Rare Candor, a podcast for people who live with and love someone with a rare disease. We'll talk about medications, accessing care, navigating everyday lift, policy and insurance issues, and more. Living with a rare disease can be an exhausting, annihilating, scary, lonely, unpredictable and invisible - for the people with their disease and those that love them. We promise not to make you depressed, peppered in humor is guaranteed, albeit likely dark humor - but we trust you will appreciate the rare candor.
Acceptance Is Not Failure: Navigating Rare Disease's Invisible Battles
In this episode, the host discusses the deeply personal journey of Jesse, a patient living with Generalized Myasthenia Gravis (gMG). Jesse shares his story of initially training to be a firefighter, only to face unexpected symptoms and a subsequent diagnosis that changed his life. From being in peak physical condition to struggling with daily tasks, Jesse opens up about the emotional rollercoaster, the dark times, and the significant breakthrough of accepting his condition. With the support of therapy, friends, and family, Jesse emphasizes that 'acceptance is not failure,' and highlights the power of connection, empathy, and resilience in navigating life with a rare disease. The episode sheds light on the unpredictability and invisible struggles of living with gMG, aiming to inspire and offer solace to others in similar situations.
14 Jan 2026
Unseen Battles: Navigating Kidney Disease with ANCA Vasculitis
Living with vasculitis—particularly GPA, MPA, and EGPA—is a winding journey filled with trial and error, especially when it comes to kidney damage, a silent but deadly threat. This podcast episode emphasizes practical advice from Laure Larkin, a GPA patient with severe kidney damage, and her wife Lynette. They delve into real-life strategies to manage kidney health and the importance of the HEAT Kit—a vital resource for emergency medical situations. Expert tips include monitoring symptoms divided into critical (red) and concerning (yellow) zones, and the essential advocacy needed when dealing with uninformed medical specialists. With insights on breakthrough treatments like avacopan (Tavneos) and the realities of quick-onset kidney crises, this episode is packed with expert advice and authentic patient perspectives to empower anyone facing the unpredictable swings of vasculitis.
23 Oct 2025
Unveiling Fasenra: The Newest Treatment for EGPA Vasculitis
In this episode of 'Rare Candor,' we shed light on the stark reality that 95% of rare diseases are without treatment. Enter Fasenra (benralizumab)—the newest treatment for those navigating eosinophilic granulomatosis with polyangiitis (EGPA). Sarah, alongside Dr. Jessica Most, dives deep into Fasenra's unique mechanism of unleashing natural killer cells to tackle eosinophils. They discuss the importance of treating patients with respect, arming them with all the facts and data they crave. The duo also navigates through safety concerns, dosing intricacies, and the uphill battle with insurance companies. Pam ends the episode by sharing tips to help your doctor, and insurance, wrap their heads around the unique dosing for EGPA. Bold, unapologetic, and utterly essential for anyone in the rare disease community.
14 Jul 2025
More Information Please: A Second Opinion Can Change Your Life
This episode dives deep into the critical topic of second opinions for those battling rare diseases. Emphasizing the often-overlooked value of getting a second—or even third—medical opinion, it compares the practice to seeking multiple quotes for major home repairs. Through a candid conversation with Dr. Samantha Shapiro, a rheumatologist from Johns Hopkins now in private practice doing second opinions, the episode highlights the necessity of expert insights, especially when dealing with complex, rare conditions. The importance of feeling heard, validated, and understood by healthcare providers is stressed, alongside practical tips for securing second opinions, like using platforms such as Second MD and leveraging crowdfunding sources like GoFundMe for financial support. Ultimately, the message is clear: patients deserve comprehensive care and should never settle for mediocre medical advice.
22 May 2025
Intimacy: Being a Human within the Context of Rare Disease
Licensed therapist Jessica Szymas discusses intimacy challenges faced by individuals with rare diseases, addressing self-image issues, trauma management, and boundary negotiation in this interview.
26 Mar 2025
Upside Down Incentives: What's Driving Up Drug Prices?
In this episode of 'Rare Candor,' the author tackles the colossal mess of medication costs, focusing on Pharmacy Benefit Managers (PBMs). Frustration seeps through as the script dissects how PBMs drive up drug prices through lack of transparency and deceptive practices. The author unpacks the Byzantine mechanisms behind list prices and the hidden rebates that enrich everyone but the patient. Through personal anecdotes and policy insights, the discussion highlights the urgent need for legislative change to cap out-of-pocket costs and shift PBMs to a fee-for-service model. It’s a call to rally against a profit-driven system that exploits the sick for corporate gain.
6 Feb 2025
Under the Microscope: Unmasking The Creation of New Treatments
The podcast episode dives into the complex and often overlooked process of drug development, highlighting its impact on rare disease communities. Important information for anyone that takes medications! Hosts explore the decade-long journey from molecule discovery to market release, emphasizing the immense financial and regulatory challenges. Guest Ron Cohen, a seasoned pharmaceutical executive, reveals the billion-dollar investments needed and the high failure rates drugs face. The discussion also uncovers the opaque role of pharmacy benefit managers (PBMs) in escalating drug prices. The episode calls for legislative changes to support orphan drugs and improve price transparency, stressing the importance of patient advocacy and legislative awareness.
16 Nov 2024
Fighting the System: Breaking Through Prior Authorization Barriers with Tenacity & Grit
Michele Oshman of BIO and physician Stephen Chetham share insights on how patients can overcome bureaucratic hurdles to access medication for rare diseases through relentless advocacy and persistence.
22 Sept 2024
Challenging Diagnosis. Unyielding Courage.
This episode of 'Rare Candor' highlights the lengthy and painful diagnostic journey, it features personal accounts from Laura and Cara, who endured extensive medical visits, emotional exhaustion, and repetitive dismissals by healthcare providers. Laura shares her battle with myasthenia gravis, including misdiagnoses and the frustration of being treated as if her symptoms were imaginary. Cara describes how despite advocating fiercely for herself, she faced significant delays in getting the necessary treatment for GPA.The episode underscores the resilience, determination, and immense courage required to navigate the healthcare system while living with a rare disease. It offers a beacon of hope and solidarity through shared stories and the importance of advocating for oneself despite the systemic challenges. The episode closes with a reflection of the Serenity Prayer, emphasizing acceptance, courage, and wisdom in the face of ongoing struggles.
10 Sept 2024
From Shadows to Strength: The Quest of Acceptance
In this episode of Rare Candor, we navigate the impact that chronic illness, fatigue and loss of stamina has on daily life, the requisite adjustment to newfound limitations, and the guilt shared between patient and partner. Laura Flanders shares the relentless toll Myasthenia Gravis takes on her energy and stamina and the tough adjustments she must make. The discussion dives into the internal conflict of accepting help. Laura vividly recounts her life-altering experiences, from struggling to mow the lawn to making decisions about her career. Her story is a powerful testament to resilience, highlighting the ongoing adaptation required to navigate an unpredictable and often invisible illness. Ultimately, the episode looks at the struggle for balance and acceptance in a life forever changed by chronic disease while stressing the importance of compassionate self-awareness and support systems.
5 Aug 2024
Whispers of Hope: Escaping the Prednisone Trap
This episode of 'Rare Candor' delves into the dual nature of Prednisone—a life-saving yet brutally demanding medication often prescribed for rare diseases. The hosts introduce Laure and Lynette, who recount the treatment journey and life today. The episode contrasts Prednisone's harsh impact with the optimism brought by emerging treatments like Tavneos, offering hope for improved quality of life. The candid discussion sheds light on the harsh realities of living with rare diseases and the emotional toll on both patients and caregivers, emphasizing resilience and the constant search for better alternatives. Despite the challenges, there's a strong message of hope and the continuous pursuit of better treatments for a better future for all rare diseases.
23 Jul 2024
Surviving The Suck: Getting Through the Bad Days
This raw and heartfelt episode tackles the daily struggles of living with rare and chronic diseases, offering candid discussions on physical and emotional coping strategies. Personal stories highlight the unpredictability, isolation, and mental toll these conditions take. Personal stories and genuine conversations shed light on how people navigate the tough days, from finding joy in small moments and emphasizing practical tips like engaging in physical activity, emotional expression, and the importance of support networks. Through shared experiences, this episode includes a conversation with Rachel Young, who has vasculitis, as well as impromptu strategies from a support group, offering a look at how people push through their darkest moments, emphasizing strength, fierce determination, and resilience for both patients and their caregivers.
5 Jul 2024
Rare & Resilient: Crushing It With Healthcare Partnerships
This episode of 'Rare Candor' dives into the art of partnering with healthcare providers, especially relevant for those grappling with rare diseases. Featuring a chat with John Stadler, an MPA patient, the discussion highlights the emotional ups and downs of forming these critical partnerships. The episode underscores the importance of mutual respect, listening, and emotional intelligence in doctors. Also, it presents the HEAT kit as a game-changer for patients, offering practical advice for navigating the healthcare maze. The conversation touches upon historical and gender disparities in medical research, reinforcing the need for patients to be well-prepared advocates for their health.
7 Jun 2024
Rare Candor: A Podcast for People Who Live With or Love Someone With A Rare Disease
This episode kicks off 'Rare Candor,' a podcast diving into the raw and unfiltered experiences of living with rare or chronic diseases. Hosts Sarah Jones and Pam Squires share their personal battles, especially Sarah's fight with EGPA (Eosinophilic Granulomatosis with Polyangiitis), and expose the glaring lack of research, persistent medical gaslighting, and the constant struggle within a failing healthcare system. With a foundation of empathy, they aim to smash the loneliness of rare disease sufferers by sharing real stories, healthcare hacks, and policy discussions. Prepare to have candid and empowering conversations that bring a voice to the often overlooked and misunderstood rare disease community.
Visit our website Eosinophilic & Rare Disease Cooperative (www.eosinophilraredisease.org) to learn more and follow us on FaceBook and LinkedIn
Reach and audience
Public platform figures. Ratings count people who left a rating, not total listeners.
Apple Podcasts (US)
5.0 / 5
4 ratings
Spotify
5.0 / 5
1 ratings
Podcast Authority Score: 11 / 100
A composite of feed quality, social presence, YouTube performance and engagement. Read the methodology.
Quality
10
Social presence
0
YouTube
0
Engagement
32
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