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Artwork for Rare Disease Discussions

Rare Disease Discussions

Peter Ciszewski, CheckRare
Fabry Disease
Myasthenia Gravis
Hereditary Angioedema
Cutaneous T-Cell Lymphoma
Lysosomal Disorders
Enzyme Replacement Therapy
Clinical Trials
Quality Of Life
Personalized Medicine
Genetic Testing
Cushing Syndrome
Multi-Organ Disease Management
Acetylcholine Receptor Autoantibodies
FDA
C1 Inhibitor Deficiency
Nephrology
Lysosomal Storage Disease
Mental Health
Endo 2024
Cortisol

News and clinical perspective including CME programs focused on rare diseases. CheckRare focuses on rare and neglected diseases.

PublishesTwice monthlyEpisodes163Founded5 years ago
Number of ListenersCategories
MedicineHealth & Fitness

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Artwork for Rare Disease Discussions

Latest Episodes

This accredited continuing education program is supported by an educational grant from Sanofi. Credit for the program can be obtained by visiting checkrare.com/learning/p-consider-rare-suspecting-and-diagnosing-cidp/ .

This program, led by ... more

YouTube

Ozlem Goker-Alpan, MD, Founder and President, Lysosomal & Rare Disorders Research & Treatment Center (LDRTC) and Raphael Schiffmann, MD, of the Texas Christian University, discuss best practices to identify and treat neurologic problems associated wi... more

YouTube

This program, led by Christiaan Scott, MD, Professor of Pediatric Rheumatology at the University of Ottawa and Raphaella Stander, MBCHB, Pediatrician at Atlantic Children’s Practice, focused on three case studies to provide physicians with education ... more

YouTube

This accredited CME program highlights the latest clinical research about immune thrombocytopenia (ITP), a rare thrombotic disorder.

Led by Shruti Chaturvedi, MD, this program provides a summary of clinically relevant data presented at the Internat... more

YouTube

Key Facts

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Recent Guests

Maya Kineen
A 22-year-old college student and advocate for Fabry disease awareness
Episode: Fabry Disease From a Patient’s Perspective, Featuring Maya Kineen
Nicola Longo
Chief of the Division of Medical Genetics, with over 30 years of experience treating Fabry disease
University of Utah
Episode: Signs and Symptoms of Fabry Disease, Featuring Nicola Longo, MD
William Burns, MD
Biochemical geneticist at Greenwood Genetic Center
Greenwood Genetic Center
Episode: Fabry Disease Overview, Featuring William Burns, MD
David Warnock
Professor Emeritus at the University of Alabama at Birmingham
University of Alabama at Birmingham
Episode: Kidney Involvement in Lysosomal Disorders

Reviews

5.0 out of 5 stars from 4 ratings
  • Great info on rare diseases

    Excellent information

    Apple Podcasts
    5
    PeterMacUser
    United States5 years ago
  • Great information

    Good information on rare diseases

    Apple Podcasts
    5
    Luke McSpedon
    United States5 years ago

Listeners Say

Key themes from listener reviews, highlighting what works and what could be improved about the show.

Listeners appreciate the thorough and informative discussions about rare diseases, particularly those that are often overlooked in the medical landscape.
The expert guests are frequently commended for their clear and engaging presentations, making complex topics accessible to the audience.

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Talking Points

Recent interactions between the hosts and their guests.

Kidney Involvement in Lysosomal Disorders
Q: Could you please talk briefly about the kidney involvement and injury that occurs in Fabry disease?
The podocyte is critical to kidney function, and in lysosomal storage diseases like Fabry, they can suffer injury due to substrate accumulation that causes organ damage, leading to a decrease in kidney functions such as proteinuria and declining filtration rates.
Fabry Disease From a Patient’s Perspective, Featuring Maya Kineen
Q: What advice would you give to a newly diagnosed patient or family of Fabry disease?
Maya advises to get connected with the community for support and to educate oneself about the disease as crucial steps for empowerment.
Fabry Disease From a Patient’s Perspective, Featuring Maya Kineen
Q: What do you do to manage these symptoms, the headaches and the pain?
Maya discusses being on treatment since her diagnosis and how it has helped manage her symptoms over the years, emphasizing the importance of self-care and awareness of her limitations.

Audience Metrics

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Listeners per Episode
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Frequently Asked Questions About Rare Disease Discussions

What is Rare Disease Discussions about and what kind of topics does it cover?

This show offers a comprehensive exploration of rare diseases, providing listeners with valuable information on clinical perspectives, research advancements, and treatment options. The episodes frequently feature insights from leading experts in the field, discussing the complexities of diagnosing and managing conditions that often receive little attention in mainstream healthcare. A notable aspect of the content is its focus on shared decision-making with patients, addressing common misconceptions about clinical trials, and emphasizing the importance of patient education and empowerment in navigating their health journey. With a commitment to disseminating knowledge about underrepresented diseases, the show appeals to healthcare profession... more

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How many listeners does Rare Disease Discussions get?

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How many subscribers and views does Rare Disease Discussions have?

To see how many followers or subscribers Rare Disease Discussions has on Spotify and other platforms such as Castbox and Podcast Addict, simply upgrade your account. You'll also find viewership figures for their YouTube channel if they have one.

Which podcasts are similar to Rare Disease Discussions?

These podcasts share a similar audience with Rare Disease Discussions:

1. Symptomatic: A Medical Mystery Podcast

How many episodes of Rare Disease Discussions are there?

Rare Disease Discussions launched 5 years ago and published 163 episodes to date. You can find more information about this podcast including rankings, audience demographics and engagement in our podcast database.

How do I contact Rare Disease Discussions?

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What guests have appeared on Rare Disease Discussions?

Recent guests on Rare Disease Discussions include:

1. Maya Kineen
2. Nicola Longo
3. William Burns, MD
4. David Warnock

To view more recent guests and their details, simply upgrade your Rephonic account. You'll also get access to a typical guest profile to help you decide if the show is worth pitching.

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