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.
Rare Candor
Claim This Podcastby Pam Squires & Sarah Jones
5.0(5 reviews)
14 episodes
Updated Bi-weekly
Accepts GuestsHas SponsorsLocation 🇺🇸
11
Podcast Authority
BetaPoorBased on show quality, social media presence, reviews, charts, and more
Quality10
Social0
YouTube0
Engagement32
Podcast Overview
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.
Language
🇺🇲
Publishing Since
6/7/2024
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11
Podcast Authority
BetaPoorBased on show quality, social media presence, reviews, charts, and more
Quality10
Social0
YouTube0
Engagement32
5
Excellent Areas
0
Good Performance
14
Growth Opportunities
excellent
Episode Length
31 minutes
Performing excellently!
poor
Publishing Consistency
Every 37 days
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Recent Episodes
March 13, 2026
Acceptance Is Not Failure: Navigating Rare Disease's Invisible Battles
<p>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.</p>
January 14, 2026
Unseen Battles: Navigating Kidney Disease with ANCA Vasculitis
<p>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.</p>
October 23, 2025
Unveiling Fasenra: The Newest Treatment for EGPA Vasculitis
<p>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.</p>
14 total episodes available
Deep-dive analytics for Rare Candor
Frequently asked questions
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- What is Rare Candor?
- How often does this podcast release new episodes?
This podcast updates bi-weekly.
- Where can I listen to this podcast?
This podcast is available on 7 platforms including Apple Podcasts, Spotify, and more. You can also use the RSS feed directly.
- Does this podcast accept guests?
No, this podcast does not typically feature guests.
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