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Artwork for Immune Deficiency Foundation

Immune Deficiency Foundation

Immune Deficiency Foundation
Primary Immunodeficiency
Immune Deficiency Foundation
Health Equity
2024 Primary Immunodeficiency Conference
Diversity, Equity, and Inclusion
Mental Health
Chronic Illness
CVID
Chicago, Illinois
Hypogammaglobulinemia
IVIG Treatment
Fatigue
Advocacy In Health
Affordable Care Act
Compromised, Life Without Immunity
Medical Immigration
Chronic Granulomatous Disease
Rare Disease Day
Social Determinants Of Health
Common Variable Immune Deficiency

This podcast is a service of the Immune Deficiency Foundation — a nonprofit organization dedicated to improving the diagnosis, treatment, and quality of life of people diagnosed with primary immunodeficiency, or PI. "Bold Conversations" is a program that explores the harsh realities of health access in the United States. Hosted by Dr. Nicole Rochester. "Undiagnosed" is a narrative docuseries on th... more

PublishesTwice monthlyEpisodes101Founded7 years ago
Number of ListenersCategory
Health & Fitness

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Artwork for Immune Deficiency Foundation

Latest Episodes

TRANSCRIPT: primaryimmune.org/sites/default/files/TRANSCRIPT%20-%20Dermatological%20issues%20podcast.pdf Dr. Alexandra Freeman and Dr. Heidi H. Kong discuss dermatological manifestations of primary immunodeficiency. The information, terminolo... more

TRANSCRIPT: primaryimmune.org/sites/default/files/TRANSCRIPT.Undiagnosed.Reuben.pdf Reuben Johnson was diagnosed with chronic granulomatous disease, or CGD, at the age of ten. So much of his story takes place after his family had found some o... more

Transcript: primaryimmune.org/sites/default/files/Transcription%20-%20PI%20and%20cancer.pdf Dr. Charlotte Cunningham-Rundles provides a presentation on the link between primary immunodeficiency (PI) and cancer. The information, terminology, a... more

Key Facts

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Number of Listeners
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Recent Guests

Myles Temple
New employee at Ronald McDonald House Charities, has personal experience with primary immunodeficiency and SCID.
Ronald McDonald House Charities
Episode: Job Hunting With Primary Immunodeficiency: HR Advice on Disclosure, Accommodations & Benefits
Dr. Jennifer Oliver
Executive Director of the Manna Movement Collaborative and food justice advocate
Manna Movement Collaborative
Episode: Bold Conversations: Food justice with Dr. Jennifer Oilver
Holly Jones
Advocate living with chronic illness and founder of HERstory In Color
HERstory In Color
Episode: Living well with PI: Caregiving for chronic illness
Dr. Cynthia Baur
Health literacy and health communications expert, endowed chair and director of the University of Maryland's Horowitz Center for Health Literacy.
University of Maryland
Episode: Bold Conversations: Misinformation with Dr. Cynthia Baur
Jolan Walter
Division Chief of Pediatric Allergy and Immunology at the University of South Florida and Johns Hopkins All Children's Hospital
University of South Florida and Johns Hopkins All Children's Hospital
Episode: Lunch & Learn: Understanding genetic variants in APDS
Rebecca Schultz
Parent of an 18-year-old son with primary immune deficiency and chronic medical conditions.
Episode: Bold Conversations: The elephant in the exam room
Alice Villarreal-Drennan
CVID patient for 14 years, shares testimony on the doctor-patient connection.
Episode: Bold Conversations: The elephant in the exam room
Jalisa Clark
Research fellow at the Center on Health Insurance Reforms at Georgetown University's McCourt School of Public Policy
Georgetown University
Episode: Bold Conversations: Health insurance
Susanna Raj
A individual who has shared a personal story about primary immunodeficiency and medical immigration.
Episode: Bold Conversations: CGD and medical immigration with Susanna Raj

Hosts

Emma Mertens
Program Manager for Education at the Immune Deficiency Foundation.
Dr. Nicole Rochester
Host of Bold Conversations and a strong advocate for health equity.

Reviews

4.8 out of 5 stars from 40 ratings
  • Love IDF and this episode!

    Thank you thank you thank you! Telling the patient's story makes it all so human. We need IDF!

    Apple Podcasts
    5
    Zebra02038
    United States3 years ago
  • Great info

    Super informative and well done!

    Apple Podcasts
    5
    Hannahmetz
    United States7 years ago
  • Love Getting More Knowledge

    I love getting any and all knowledge I can and especially up to date information. I don't enjoy reading articles. Hearing a conversation while I am working on things is such a great way to learn more about my CVID and educate myself on new research that is going on, how it effects us and gain more knowledge. Thanks for offering this!!

    Apple Podcasts
    5
    pjeaston9
    United States7 years ago
  • Perfect!

    The IDF is a godsend to those of us with PI and I love that this podcast is geared towards young adults too! As someone with CVID, I am so grateful for them!Love the first episode and can’t wait for more to come!

    Apple Podcasts
    5
    coastergirl99
    United States7 years ago

Listeners Say

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

Many express gratitude for the support and community provided through the episodes, highlighting a sense of connection.
Feedback often mentions the podcast's role in educating listeners on key issues related to primary immunodeficiency.
The information is regarded as informative and valuable, particularly for those navigating chronic illness.
Listeners appreciate the personal stories shared, finding them relatable and inspiring.

Top Health & Fitness Podcasts

Talking Points

Recent interactions between the hosts and their guests.

How FOXP3 changed immunology: Tregs, IPEX, and the Nobel Prize explained
Q: How close are we to any of those CAR-T regulatory cells being available to patients?
Some CAR-T regulatory cells are starting into early-phase safety trials.
How FOXP3 changed immunology: Tregs, IPEX, and the Nobel Prize explained
Q: Are there other PIs that are affected where the Tregs are affected?
Yes, there are several primary immunodeficiencies where Tregs are impacted, leading to autoimmune issues.
How FOXP3 changed immunology: Tregs, IPEX, and the Nobel Prize explained
Q: So can you explain regulatory T cells?
Regulatory T cells are crucial in controlling immune responses and preventing overactivity in the immune system.
Lunch and Learn: HLH with Dr. Michael Jordan
Q: Do you know of any patients that had a primary HLH flare and have survived for several years without undergoing stem cell transplant?
Yes, there are examples of individuals that have had a full-blown or partial flare of HLH that had been treated and had then been quiescent for a number of years.
Lunch and Learn: HLH with Dr. Michael Jordan
Q: Can you tell us about any opportunities for future research into HLH?
There are several ongoing clinical trials, but most of the current trials are not open.

Audience Metrics

Listeners, social reach, demographics and more for this podcast.

Listeners per Episode
Gender Skew
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Social Media Reach

Frequently Asked Questions About Immune Deficiency Foundation

What is Immune Deficiency Foundation about and what kind of topics does it cover?

Focusing on the lived experiences of individuals affected by primary immunodeficiency (PI), the content highlights personal stories, expert insights, and crucial topics related to health access and equity. Listeners can expect to hear discussions on a variety of subjects including the intersection of chronic illness with social justice, workplace challenges for those with immune deficiencies, and the ongoing efforts to enhance health literacy in marginalized communities. Notably, the podcast also addresses pressing issues such as employment rights, food justice, and the emotional wellbeing of caregivers, while celebrating community initiatives that support individuals living with PI. This unique blend of personal narrative and expert analys... more

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Which podcasts are similar to Immune Deficiency Foundation?

These podcasts share a similar audience with Immune Deficiency Foundation:

1. The Daily
2. Pod Save America

How many episodes of Immune Deficiency Foundation are there?

Immune Deficiency Foundation launched 7 years ago and published 101 episodes to date. You can find more information about this podcast including rankings, audience demographics and engagement in our podcast database.

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What guests have appeared on Immune Deficiency Foundation?

Recent guests on Immune Deficiency Foundation include:

1. Myles Temple
2. Dr. Jennifer Oliver
3. Holly Jones
4. Dr. Cynthia Baur
5. Jolan Walter
6. Rebecca Schultz
7. Alice Villarreal-Drennan
8. Jalisa Clark

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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